Today
Mon 21 June 2021

Saba Salman speaks to people with learning disabilities to explore how the Government can prevent this group from being sidelined again – as they have been during the Coronavirus pandemic

“The Government should look at the mistakes they made, why people with learning disabilities had to go through what they did, and try and improve and make sure needs are met during the next pandemic,” says Moiz Tayabali Daudali, a learning disabled Londoner and a member of the charity Harrow Mencap.

A year on from the first COVID-19 lockdown, and after irrefutable evidence of how those disproportionately affected by the virus were an afterthought in the response to it, Daudali wants answers – and action to prevent this happening again.

As Byline Times has previously reported, Public Health England figures show that learning disabled people are six times more likely to die from the Coronavirus than the general population and younger learning disabled people are 30 times more likely to die. 80% of deaths among learning disabled people in England were COVID-related in the week ending 22 January, according to statistics from the NHS and the Office for National Statistics.

Meanwhile, a new report from the regulator, the Care Quality Commission, has highlighted how ‘do not attempt cardiopulmonary resuscitation’ notices have been placed on learning disabled people’s medical records in the pandemic – without their knowledge or that of their families. The latest findings from a UK-wide Coronavirus and people with learning disabilities study reinforce this wide-ranging impact on everything from a loss of support to isolation and the toll on people’s mental and physical health.  

But, despite the additional risks the virus creates for a group already experiencing significant inequalities, the Government failed to prioritise this part of our population for the vaccine and relented only after high-profile lobbying by BBC radio presenter Jo Whiley on behalf of her sister Frances, alongside pressure from campaigners. 

In terms of action to improve the lives of learning disabled people, Daudali and his peers at Harrow Mencap argue that one answer lies in its recently launched campaign, Nurses not Hearses. Daudali, who experienced depression during the first lockdown, is among those pushing the NHS and Government to tackle the national shortage of specialist learning disability nurses (numbers fell by 40% to 3,223 between 2010 and 2020).

Fellow campaigner David House adds that this needs to be combined with attitudinal change. “We are not treated as equal in the hospital and we want to be treated not just as people with learning disabilities, just be treated like everyone else,” he says.

Practically speaking, say the campaigners, healthcare services should always make “reasonable adjustments” – a duty outlined in equality legislation. This could involve taking time to communicate with learning disabled people or providing information in ‘easy read’ formats. 

Accessible information, says Shalim Ali, a DJ and trustee at inclusive arts charity Heart n Soul, helps counter feelings of isolation and alienation. Ali says he relies on his support staff and family to translate information about the virus.

“When the Government talks about the science, I tend not to understand it all,” he says. “There was no indication at the start of COVID of any ‘easy read’ information.” 

Ali stresses that some people may also need accessible information in languages other than English. He adds that, as we come out of lockdown, one way to ease isolation is for the Government to work with voluntary organisations and create buddying schemes for learning disabled people.

More widely, the pandemic has underlined the urgent need for funding and reform of the social care system that people rely on to live more independent lives. While the Government has repeatedly called for the public to “protect the NHS”, there has been no equivalent spotlight on social care. 

The Government eventually wised up to the threat to one aspect of social care – residential care homes – but failed to acknowledge the impact on other parts of the sector, such as supported living. Last year, supported living staff did not have reliable supplies of personal protective equipment or access to testing and waited months for specific guidance. Social care was also effectively ignored in the recent budget, raising fresh fears about the sustainability of support services.

A year after the pandemic first hit, there are concerns that the physical support cut during the first wave of the virus will never be fully reinstated. As Ali says: “If there’s a public inquiry, lots of organisations have cut their funding and that needs to be questioned. So are organisations that run events online going to carry on? It’s optimistic to think all real life activities will come back.”

Ali adds that local government, struggling with the impact of the Coronavirus on top of years of austerity, may treat learning disability services as low-hanging fruit. “Are councils going to keep money aside for people with learning disabilities?” he says. “Are people going to have benefits cut? People rely on public transport, but will this be cut and will people still get their Freedom Pass [a concessionary travel scheme in London]? These are the important things we need to raise.” 

Like many learning disabled people and their families, Ali is worried that the focus on the “elderly and vulnerable” – albeit vital – is at the expense of other groups that also need support. He says: “We get pushed out of the equation… Some people may have less to do in the future. I worry for the next generation of people with learning disabilities.”

Mark Brookes, advocacy lead with social care provider Dimensions, agrees: “The pandemic has hit everyone, but throughout people with learning disabilities have been left behind. I don’t think it’s been done on purpose, but I believe we should have been thought about more – especially as it became clear that we are at a higher risk of death… It’s great that everyone with learning disability is now prioritised for the vaccine, but it took so long for this to happen”.

As Brookes says, for learning disabled people and their families, the pandemic has further exposed the gaps that already existed: “The issue is systemic and the inequalities faced by all of us have existed for a long time.”

Now that Boris Johnson has unveiled his roadmap out of lockdown, there is a fresh opportunity to redress the imbalance and ensure that the country’s recovery from the pandemic is an inclusive one. 

Brookes adds that the UK’s post-pandemic society must tackle the structural issues that have left learning disabled people treated as second-class citizens: “As we come out of the pandemic, issues such as social care reform or health inequalities need to be addressed urgently, so people with learning disabilities are not forgotten about again.” 

Saba Salman is the editor of ‘Made Possible: Stories of Success by Learning Disabled People – In their Own Words’ and the chair of the charity Sibs, which supports the siblings of disabled children and adults

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