Disabled people have faced discrimination in every area of their lives from the beginning of the coronavirus pandemic, new research by a user-led organisation has found.
The research by Inclusion London reveals that the COVID-19 crisis is impacting disabled people across every part of their lives.
Disability News Service has seen a draft version of an interim report based on the research, Abandoned, Forgotten and Ignored, which concludes: “Despite the government’s rhetoric about protecting and supporting Disabled people, the reality is that during the pandemic we have been treated less fairly and discriminated against across all areas of our lives.”
But it also warns that – because many disabled people most affected by the pandemic, such as those in care homes or psychiatric institutions, will not have had access to its online survey – the findings are likely to represent only “the tip of the iceberg”.
The report is based on more than 300 online responses from across England (as well as a small number from Scotland and Wales) to the survey.
Inclusion London says those responses show disabled people reporting increasing levels of mental distress, social isolation, a lack of care and support, problems with accessing food and medicine, and unequal access to healthcare.
The research also highlights how the actions of central government, local authorities and service-providers have continued to exclude and marginalise disabled people and expose them to discrimination.
Disabled people have repeatedly had to resort to legal action to put an end to the discrimination they have faced during the crisis, the report says.
It adds: “The coronavirus crisis has reinforced the view amongst many of us that society looks on us as second class citizens, a burden on the state and expendable.”
Among the evidence from the report, disabled people in high-risk groups said they had been unable to obtain personal protective equipment (PPE), and had had their care packages cut and their social care assessments delayed.
More than a quarter of those who responded said they had had problems securing PPE, with some being forced to place essential social care on hold because of shortages of PPE and the lack of effective testing of staff for COVID-19.
Lengthy delays by the government in publishing guidance meant that those receiving direct payments “were primarily left on their own”, says the report, and were expected to deal with staff issues, source their own PPE and put in place their own emergency contingency plans.
One disabled person said: “My care agency are not getting adequate PPE, and they are so short-staffed at present that I’ve been lucky to get a shower once a month (and cannot have a strip wash at all due to them sending male care workers to me eight times out of 10 instead of female), and am not getting one in three of my daily care calls.”
More than three-fifths of those who responded to the survey said they had struggled to access food, medicine, and other necessities.
Some described how supermarkets refused to make reasonable adjustments for them when they tried to shop in-store, or how they were unable to order home deliveries; others have not received the support they need to prepare meals; and some have been forced to spend more money on food by having to shop in more expensive stores or order meals online.
One respondent said: “I am not considered vulnerable as I don’t have any of the qualifying conditions on the government website, but due to blindness, I’m unable to get priority access to online deliveries for food shopping.
“Being blind and living alone with no support nearby, I cannot physically attend a supermarket as I require a member of staff to guide me around the shop.
“I have no idea where my next meal is coming from.”
Nearly half of the respondents reported inaccessible and confusing public health information and government guidance.
One said: “Lack of information, lack of support. No one contacted me from social services to see if I was coping.
“I got in contact as no PPEs, no key worker ID for my PAs. No info as to what to do if I or my PAs have to self isolate.
“I feel completely ignored as a direct payment client. I’ve been left to get on with it!”
More than a third of those surveyed spoke of their own increasing levels of mental distress during the pandemic.
One respondent said: “I have been inside for three-and-a-half weeks without going out, and I’m losing my mind.
“I have a pre-existing mental health condition, and this is seriously causing a big relapse.
“I feel trapped and controlled and claustrophobic and constantly on edge and irritable.
“But I’m too scared to leave the house because if I get sick, I know that, as someone with pre-existing conditions, doctors will leave me to die in favour of someone who has a better chance of surviving.”
Several of those who responded to the survey said they had been asked to agree to having “do not attempt resuscitation” orders placed in their medical records, with others told they would not be admitted to hospital if they fell ill or would be denied life-saving emergency treatment.
One said: “I can’t access the government scheme for support because apparently I’m not disabled enough.
“However I’m disabled enough to get suggested to sign DNR [Do Not Resuscitate], and inferred I’d be left to die if hospitalised.”
Inclusion London concludes the report by warning that there will be a “much higher demand” for advice and support from disabled people after the lockdown is lifted, which will mean a need for increased funding for these services.
There is also likely to be a “significant need” for funding for DPOs to provide new support services for the thousands of disabled people who will probably need to shield at home over the next 12 to 18 months, the report says.
*A webinar and panel discussion to launch the report will take place on Wednesday (24 June) from 5pm to 6.30pm. Register here to attend
**For sources of information and support during the coronavirus crisis, visit the DNS advice and information page
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