Three self-advocacy groups have spoken out on their concerns about the impact of the COVID-19 crisis on people with learning difficulties and autistic people.
People First (Self Advocacy), based in London; Change, based in Leeds; and Brighton and Hove Speak Out, have all highlighted concerns this week about how the crisis is affecting their rights.
People First and Change issued a joint statement (PDF) that raises fears that autistic people and those with learning difficulties might not receive the support they need to understand what was happening to them if they were admitted to hospital with coronavirus.
They said they were also scared that they might not receive equal treatment in hospital.
The two self-advocacy groups said they supported a statement – backed by more than 2,000 disabled people and allies – which has warned the government and NHS England that disabled people’s rights to treatment and care were “not always being upheld” during the crisis.
People First and Change said that some people with learning difficulties and autistic people were receiving less support as a result of the crisis, while some were receiving no support to help them understand what was happening, which meant many did not understand the “government jargon and messages”.
They said: “We are feeling cut off. We are feeling left out from society and alone.”
They called for accessible information; support to understand that information; and support to make decisions about their health.
They added: “We are scared that if we go into hospital, doctors and nurses will make a decision that means we won’t get equal treatment.”
And they said they feared that doctors and nurses might not know about the “great things” that people with learning difficulties do to make society a better place, and that they fear that hospital staff might think that their “lives don’t matter”.
Meanwhile, the Being Heard in Government group run by Brighton and Hove Speak Out has raised its own concerns about the impact of the pandemic on people with learning difficulties.
Rohan Lowe (pictured), a founder member, said his group was worried about the impact of the crisis on those with little or no support in their lives, who may not know what services were available to support them.
One person called Speak Out to ask how they could get some food, because they had run out and did not know they were allowed to leave their home to buy some more.
Others are still visiting friends and neighbours because they do not understand the rules and importance of social distancing.
Lowe said he was also concerned that some may not understand how to stay safe because they have no access to the internet or do not understand the news, while a letter written by the prime minister about coronavirus and sent out to households across the country was not accessible to many people with learning difficulties.
Others will struggle after losing their usual routines, with the anxiety of not knowing when the crisis will end, or will find it difficult to buy food.
Speak Out is now hoping to tell as many people with learning difficulties as possible in the Brighton and Hove area about its helpline.
The helpline* provides information on coronavirus, advocacy and support, and the opportunity to connect with other people, either through a regular phone conversation or by joining online groups.
*The helpline number is 01273 421921 and is run from 9am to 5pm every weekday, with more information on Speak Out’s website
**Links to sources of information and support during the coronavirus pandemic include the following:
The Department of Health and Social Care
National Survivor User Network
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