The pandemic may not be over, but vaccinations have returned life to normal for most of us. The rule of six and support bubbles are but hazy memories, which makes it easy to forget that Covid continues to have a profound impact on some people’s lives.
There are reports of care homes still using the pandemic to restrict visiting, despite government guidance having changed months ago. Some immunosuppressed people are still shielding at home, because vaccines offer them insufficient protection.
One group that has seen their lives relaxed, only to be restricted again, is people with learning disabilities. During 2020, adults with a learning disability aged 18-34 were 30 times more likely to die after catching Covid than their peers.
Nicky Clark, a campaigner for people with learning disabilities, told me what the pandemic has been like for her family. Emily, her daughter, is severely learning disabled and lives in a rented property with 24-hour support from three carers. She did not see her family for over a year. “It was absolute agony,” Nicky tells me. “Emily couldn’t understand why she couldn’t go swimming, to the cafe for lemonade, or to the seaside, or why everyone around her was wearing masks, or why she could only FaceTime us. She blamed herself – she thought she’d done something wrong.”
This group feared the impact of Covid from the start: before the pandemic, the leading cause of death among people with learning disabilities was respiratory disease. Nicky campaigned for them to be given priority access to vaccines from the beginning. Yet even after the extra risks became clear, she was told by the government for weeks that they weren’t high enough. The guidance was not changed to include everyone on the learning disability register as clinically vulnerable until late February 2021, after some had already been left fighting for their lives in hospital.
Emily’s quality of life started to return following her jabs in February and May and her booster in November 2021. Nicky assumed that after further clinical reports on learning disabilities stressing the importance of vaccination, her daughter would be prioritised for a spring booster. She was wrong: almost 10 months after her last jab, she has still not had a second.
“Her life has become more restricted again and her hair has started to fall out again like it did in the first lockdown,” Nicky says. After weeks spent raising this, she has only just got confirmation from the government that adults with learning disabilities will be in the second priority group for the autumn booster rollout, but it could still be November before Emily is protected and can go out again.
The cruelty is that all this was avoidable had Emily been given a spring booster. The government’s decision not to offer a booster to adults with learning disabilities takes no account of the trauma of avoidable hospital treatment for someone who may not, for example, understand why they need oxygen, or why their regular carers can’t come with them into hospital, described vividly by radio DJ Jo Whiley about her sister, Frances, after she contracted Covid. In a world where infection rates are high and society-level precautions have been dropped, denying Emily a booster means she has needlessly forgone the things that give her life meaning.
This is a microcosm of what those with learning disabilities and their relatives have to contend with. They have to fight the system to be treated with a shred of the dignity most of us would take for granted. Emily attended a residential school where, unbeknown to her parents, prone restraint was used on her; Nicky says that after she left Emily would put herself face down on the floor when she got distressed, until she eventually realised she would no longer be subjected to this.
The government is committed to reducing the number of adults with learning disabilities and autism who live in residential facilities, but has missed already modest targets; Nicky says the only reason Emily lives independently today is because she and her husband persuaded the local authority to release a property earmarked for other purposes and put in place a care support package instead of the long-stay hospital that was proposed for her.
Far too many young people are denied the chance to live lives infused with love and meaning, sectioned against their will for years in institutional settings that make their behaviours of distress far worse and more difficult to manage.
Journalists like Ian Birrell have uncovered horrific practices, such as the inappropriate use of drugs to control behaviour, young people living in isolation so extreme their meals are delivered to them through a hatch and families not being allowed to visit because it causes too much distress when they leave.
Like the care home and children’s home sectors, some of these residential units are run for profit by companies owned by private equity funds, which have spied an opportunity to make a healthy return out of a guaranteed government income stream through care for vulnerable people.
It is not a question of money – a residential placement costs much more than supporting an adult with learning disabilities to live in the community – but a lack of political will to change things. That lack of political will simply reflects the huge societal stigma that still exists around learning disability. For all the welcome focus on combating discrimination we have seen from the NHS, employers and educational institutions in recent years, the rights of adults with learning disabilities remain an unfashionable cause.
In every aspect of their lives, the state and society treat them as second-class citizens, as problems to be managed and risks to be minimised, rather than as the individuals – with the same rights as all of us – that they are.
• Sonia Sodha is an Observer columnist
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