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Into perspective: Learning disability support as COVID-19 restrictions ease

How should people with learning disabilities be supported in the wake of Covid-19 restrictions easing?

Whilst the easing of almost all COVID-19 restrictions in England has been a momentous occasion for most, it is unlikely that the most vulnerable in society will have shared the same sentiment. In particular, people with learning disabilities, who have recently been identified as being eight times more likely to die from COVID-19 than the general population, may be burdened by feelings of uncertainty and trepidation as they settle back into everyday life, with limited reassurance about whether their health and wellbeing will be prioritised in the wake of COVID-19 restrictions easing.

The story so far

For people with Down’s syndrome, who, according to the London School of Hygiene & Tropical Medicine, Oxford University and Public Health England are 36 times more likely to die from COVID-19 than the general population, there is hope. This being access to the approved booster programme, which will see select groups of people most susceptible to COVID-19 receive a third vaccine with winter looming. People with Down’s syndrome have been categorised as clinically extremely vulnerable by Government and are therefore eligible to be offered a booster dose once the programme is underway by the end of September, estimates the Health and Social Care Secretary, Sajid Javid. The JCVI had outlined several complex and ethical barriers to rolling out the booster programme, which was expanded upon by Professor Dame Sarah Gilbert, a leading figure in the development of the Oxford AstraZeneca jab, who suggested that extra vaccines should be directed to low-uptake countries.

While the booster programme is a step in the right direction, the lack of urgency in its current form to prioritise people with profound learning disabilities is difficult to overlook. But what about people living with other learning disabilities? In response to the findings that people with learning disabilities are five times more likely to be hospitalised after infection than the general population, some in the sector have called for Government to extend the scope of the booster programme to offer a third vaccine to all people living with a learning disability, not just those with Down’s syndrome. Dan Scorer, Head of Policy and Public Affairs at Mencap, has also urged Government and the NHS to ‘raise awareness of the Learning Disability register and the benefits of being on it amongst people with a learning disability and their families.’

Making the case for young people

Monday 13th September saw the announcement that people aged 12 to 15 in England will be offered one dose of the Pfizer/BioNTech COVID-19 vaccine, following advice from the four UK Chief Medical Officers. In the case of young people with learning disabilities, it seems that they have also been overlooked for prioritisation despite the evidence cited in this article and two recent opportunities for vaccination. The first involves the JCVI initially explaining its decision to not approve universal vaccination of 12- to 15-year-olds, recommending that extra doses would be better placed serving older children with health conditions, such as heart disease, type 1 diabetes and severe asthma.

Secondly, the Health and Social Care Secretary has insisted that offering a third COVID-19 vaccine to half a million people aged 12 and up with severely weakened immune systems is part of the ongoing primary vaccination schedule. Eligible people include those with particular diseases such as HIV and blood cancer, and people on medication that damps down the immunity supplied by the first two vaccines. Despite the unquestionable need to ensure the safety of both vulnerable groups discussed in these instances, the case remains for the adult social care sector to argue that people with learning disabilities, of all ages, are without certainty of prioritisation in the wake of COVID-19 restrictions easing in England.

Everyone with a learning disability ought to have been vaccinated sooner

Recent reports suggest that if you have a learning disability, you are six times more likely to die from COVID-19 than someone who does not. NHS data from 17 million health records puts this figure even higher at an eight times increased risk.

People with a ‘severe and profound learning disability’ including those with Down’s Syndrome were part of the sixth group to receive their COVID-19 vaccine, but people with moderate learning disabilities, autism or both were prioritised on the basis of their age along with the rest of the UK population.

It was always the view of ARC England’s members that the largely age-based Joint Committee on Vaccination and Immunisation (JCVI) prioritisation model (published 30th December 2020) did not accurately reflect either the additional clinical needs of people with a learning disability or the social and psychological impacts of the restrictions placed upon them last year.

The July 2020 Learning Disability Mortality Review (LeDeR) confirmed that COVID-19 was the cause of death in only 4% of people aged 85 or over with learning disabilities, versus 47% in the general population. It also showed that 65% of people with a learning disability who died from COVID-19 in the first wave had a mild or moderate learning disability and were in much younger age categories. Whichever statistics you read, the information now suggests everyone with a learning disability ought to have been vaccinated sooner than they were.

In addition, because there is no comprehensive learning disability register, reaching everyone who was eligible was far from straightforward when their turn to be vaccinated eventually came. I believe that if the JCVI, which advises UK health departments on immunisation, works with the support of the social care sector, we can learn from what happened when COVID-19 deaths were at their highest.
If we are serious about tackling the long-standing health inequalities that affect people with a learning disability, autism or both, they should be prioritised and receive their boosters along with the other people in the JCVI group one.

Clive Parry, Director, ARC England

Choice and control in the new normal

People with a learning disability have suffered more than most through the pandemic. According to research conducted by the British Medical Journal (BMJ), people with learning disabilities are eight times more likely to die from COVID-19, therefore strict infection control measures have been the priority. But for many of the people we support, the combination of staff decked out in PPE, not being allowed visitors and normal activities being curtailed has been a stressful and bewildering experience.

Over the summer, restrictions eased and many support services re-opened. For many of us, it feels like life is beginning to get back to normal and long may that continue. However, the sector continues to face a number of challenges.

From November 11th, all care home workers in England must be double jabbed, unless exempt. Inevitably, some members of staff will take the decision to leave. This is hard for the people we support and intensifies the recruitment challenges that we were already facing.

Despite this, vaccination is clearly the best tool to keep the people we support safe.
The dedication and resilience demonstrated by our staff through the pandemic has been remarkable. Staff who feel happy and supported is the key to delivering high quality support.

At Turning Point, all staff have access to health and wellbeing support – interactive online health and wellbeing support and therapy, from Rightsteps. As restrictions have eased, the number of staff accessing this support has increased significantly which suggests to me that the impact of the pandemic on the social care workforce will be felt for some time to come.

PPE and vaccinations for staff are here to stay, but this must not distract us in our efforts to ensure quality. James, a resident at one of our learning disability care homes in Salford, answered the door to a CQC inspector recently and demanded to see proof that she had been double vaccinated – an example of what choice and control looks like in the ‘new normal’.

Julie Bass, Chief Executive, Turning Point

About Clive Parry

Clive joined ARC as the Director for England in late 2020 when, as well as all the challenges the sector was already coping with, providers were also dealing with the impact of a global pandemic.

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Clive has previously undertaken a variety of roles in a number of charities that support people with learning disabilities and he is responsible for the leadership of the England team which includes a greeing the steps we will take towards becoming an organisation that is led by people who have a learning disability autism or both.

About Julie Bass

Julie Bass has been an executive board director at Turning Point since 2009 and now holds the position of Chief Executive. Prior to this, Julie worked in financial services in the UK and overseas in a…

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wide variety of roles including holding responsibility for strategy, organisational effectiveness, performance and development and people related functions. She is passionate about supporting individ uals to discover new possibilities in their lives through the provision of high quality, constantly evolving services and interactions. Julie is a Chartered Insurer and a fellow of the Chartered Insti tute of Personnel and Development.

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