My sister is eight times more likely to die of Covid. Yet so little thought has been given to her welfare, says Saba Salman, chair of the charity Sibs
Freedom day” was a fallacy for people with learning disabilities and their families. While much of England eagerly anticipated Monday’s lifting of restrictions, there was little advance thought as to how learning disabled people, like my sister Raana, would return to “normal life”.
New research shows that learning disabled people are eight times more likely to die from Covid and five times more at risk of hospitalisation. The study, by the London School of Hygiene and Tropical Medicine, Oxford University and Public Health England, is the latest proof – if it were needed – that Covid heaps disadvantage on to those already marginalised. The risk is even greater for learning disabled people from black, ethnic and minority backgrounds.
Even before Covid, the health inequalities facing this part of our population – 1.5 million people in the UK – were clear. Poorer healthcare means people with learning disabilities die more than 20 years earlier than everyone else.
The fact that people like Raana were off the national “freedom day” radar is further proof that the government treats disabled people as expendable. Take the fact that the government dragged its heels in prioritising the group for vaccination, despite compelling evidence of the higher risk of death. And it was only a few days ago that new guidance finally recommended children over 12 with severe neuro-disabilities, Down’s syndrome, immunosuppression and multiple or severe learning disabilities be allowed the Pfizer vaccine, along with those over 12 in the same household as immunosuppressed people.
According to estimates by Chris Hatton, a professor at Manchester Metropolitan University and a lead researcher for the national Coronavirus and People with Learning Disabilities study, almost 40,000 learning disabled people remain unvaccinated. This may be due to health risks, needle phobia or lack of information. Hatton says of his research: “Throughout the pandemic, people and families have consistently reported feeling forgotten and abandoned. Those living with minimal support, especially younger adults, are less likely to have been fully vaccinated.”
That Raana has so far not contracted Covid is thanks largely to the staff at her supported living – housing combined with personal care – facility in Hampshire. Despite the essential role of supported living staff during Covid, this type of care is an afterthought for the government. Covid guidance for supported living was months late, along with PPE and testing. Compulsory vaccination is on the horizon for staff in care homes, but not in supported living.
My family also struggles with the new onus on personal responsibility when it comes to wearing masks or avoiding unvaccinated people. Making snap judgments on risk is tricky enough, but unimaginably stressful for someone who finds communication difficult and needs more time to make decisions. While I can barely follow the government’s mixed messages on restrictions, for my sister this is impossible. The disregard for disabled people is reflected by the absence of any comprehensive, centralised and widely advertised accessible information on Covid. Better information would allay some of the anxiety experienced by people and families. The pandemic has already had a profound effect on my sister’s mental health. This is clear from the bouts of skin-picking, nausea and barrage of texts seeking reassurance on visiting dates.
The toll on families and carers is huge. According to the Coronavirus and People with Learning Disabilities study, 90% of 272 family carers or paid staff surveyed between April and May said their health has been adversely affected by their support role. Connor Corcoran, 20, is autistic and learning disabled, and has the inflammatory bowel disease Crohn’s. His sister Sammie describes the devastating impact of going without face-to-face contact and her brother’s isolation during lockdown in their parents’ home in Manchester: “He says it doesn’t feel like I’m his sister any more and he’s uncomfortable in a room with me. He’s forgotten how to be with people.” She adds of the lifting of restrictions: “Going back to normality doesn’t end the restrictions for my brother because of messages like not mixing with unvaccinated people. If we follow that properly, it’s almost like he has less freedom than before.”
Even if people are able to resume their pre-Covid activities, many of these have stopped or are now unaffordable. As guardian to her autistic, learning-disabled bother, Rashmi Becker knows the 51-year-old wants to return to his swimming, gym and trampolining classes in north London. But the leisure providers have either introduced prohibitive charges or say they cannot run sessions because of high demand or increased risk. Becker says she feels anxious and guilty for failing to help her brother do the simple things he loves. “My concern about ‘freedom day’ is that it will benefit people with means and ability without protecting the rights and freedoms of disabled people like my brother.”
This new landscape facing people with learning disabilities and their families comes on top of years of successive governments neglecting social care, which disabled people rely on to live ordinary lives. If ever there was a need for the government’s long-promised national disability strategy (to “make practical changes to policies which strengthen disabled people’s ability to participate fully in society”), it is now. Yet there is still no sign of the plan, originally due for publication by the end of 2020, then rescheduled for earlier this year.
Shaun Webster, a Leeds-based human rights campaigner who has a learning disability, says of “freedom day”: “It’s too rushed. I don’t feel safe on trains. I feel more vulnerable now. We’re at the back of the queue again.” As the country opens up, for many learning disabled people and their families it will feel as if it is shrinking. Or as Webster says: “It’s not ‘freedom day’ because it gives freedom to some people while taking it away from us.”
New research shows that learning disabled people are eight times more likely to die from Covid and five times more at risk of hospitalisation. The study, by the London School of Hygiene and Tropical Medicine, Oxford University and Public Health England, is the latest proof – if it were needed – that Covid heaps disadvantage on to those already marginalised. The risk is even greater for learning disabled people from black, ethnic and minority backgrounds.
Even before Covid, the health inequalities facing this part of our population – 1.5 million people in the UK – were clear. Poorer healthcare means people with learning disabilities die more than 20 years earlier than everyone else.
The fact that people like Raana were off the national “freedom day” radar is further proof that the government treats disabled people as expendable. Take the fact that the government dragged its heels in prioritising the group for vaccination, despite compelling evidence of the higher risk of death. And it was only a few days ago that new guidance finally recommended children over 12 with severe neuro-disabilities, Down’s syndrome, immunosuppression and multiple or severe learning disabilities be allowed the Pfizer vaccine, along with those over 12 in the same household as immunosuppressed people.
According to estimates by Chris Hatton, a professor at Manchester Metropolitan University and a lead researcher for the national Coronavirus and People with Learning Disabilities study, almost 40,000 learning disabled people remain unvaccinated. This may be due to health risks, needle phobia or lack of information. Hatton says of his research: “Throughout the pandemic, people and families have consistently reported feeling forgotten and abandoned. Those living with minimal support, especially younger adults, are less likely to have been fully vaccinated.”
That Raana has so far not contracted Covid is thanks largely to the staff at her supported living – housing combined with personal care – facility in Hampshire. Despite the essential role of supported living staff during Covid, this type of care is an afterthought for the government. Covid guidance for supported living was months late, along with PPE and testing. Compulsory vaccination is on the horizon for staff in care homes, but not in supported living.
My family also struggles with the new onus on personal responsibility when it comes to wearing masks or avoiding unvaccinated people. Making snap judgments on risk is tricky enough, but unimaginably stressful for someone who finds communication difficult and needs more time to make decisions. While I can barely follow the government’s mixed messages on restrictions, for my sister this is impossible. The disregard for disabled people is reflected by the absence of any comprehensive, centralised and widely advertised accessible information on Covid. Better information would allay some of the anxiety experienced by people and families. The pandemic has already had a profound effect on my sister’s mental health. This is clear from the bouts of skin-picking, nausea and barrage of texts seeking reassurance on visiting dates.
The toll on families and carers is huge. According to the Coronavirus and People with Learning Disabilities study, 90% of 272 family carers or paid staff surveyed between April and May said their health has been adversely affected by their support role. Connor Corcoran, 20, is autistic and learning disabled, and has the inflammatory bowel disease Crohn’s. His sister Sammie describes the devastating impact of going without face-to-face contact and her brother’s isolation during lockdown in their parents’ home in Manchester: “He says it doesn’t feel like I’m his sister any more and he’s uncomfortable in a room with me. He’s forgotten how to be with people.” She adds of the lifting of restrictions: “Going back to normality doesn’t end the restrictions for my brother because of messages like not mixing with unvaccinated people. If we follow that properly, it’s almost like he has less freedom than before.”
Even if people are able to resume their pre-Covid activities, many of these have stopped or are now unaffordable. As guardian to her autistic, learning-disabled bother, Rashmi Becker knows the 51-year-old wants to return to his swimming, gym and trampolining classes in north London. But the leisure providers have either introduced prohibitive charges or say they cannot run sessions because of high demand or increased risk. Becker says she feels anxious and guilty for failing to help her brother do the simple things he loves. “My concern about ‘freedom day’ is that it will benefit people with means and ability without protecting the rights and freedoms of disabled people like my brother.”
This new landscape facing people with learning disabilities and their families comes on top of years of successive governments neglecting social care, which disabled people rely on to live ordinary lives. If ever there was a need for the government’s long-promised national disability strategy (to “make practical changes to policies which strengthen disabled people’s ability to participate fully in society”), it is now. Yet there is still no sign of the plan, originally due for publication by the end of 2020, then rescheduled for earlier this year.
Shaun Webster, a Leeds-based human rights campaigner who has a learning disability, says of “freedom day”: “It’s too rushed. I don’t feel safe on trains. I feel more vulnerable now. We’re at the back of the queue again.” As the country opens up, for many learning disabled people and their families it will feel as if it is shrinking. Or as Webster says: “It’s not ‘freedom day’ because it gives freedom to some people while taking it away from us.”