Significant numbers of disabled people in Scotland have had their care and support packages cut or stopped because of the coronavirus pandemic, new research by a national user-led organisation suggests.
Inclusion Scotland said that 30 per cent of those who responded to a question on an online survey had seen their support reduced or removed.
And nearly two-thirds of disabled people and carers who responded to another question said they were struggling to access food and medicine.
Inclusion Scotland said the survey responses painted “a very disturbing picture of personal and collective despair during lockdown” but also provided “intriguing glimmers of hope for what could come next, if disabled people’s voices are heard during and after the crisis”.
It pointed out that the pandemic had provided a new focus on the need for investment in social care, remote working, online resources, accessible information and flexible working, which disabled people and disabled people’s organisations had long called for.
But Inclusion Scotland also said the pandemic had highlighted how disabled people are stigmatised as “vulnerable” and “problematic”.
It said that disabled people and disabled people’s organisations (DPOs) must be involved in rebuilding services after the crisis was over, while DPOs must be adequately funded to carry out this work and support disabled people during the pandemic.
Even though the survey did not ask about “do not attempt resuscitation” (DNAR) forms, four of those who responded said they had been asked to agree to a DNAR notice being placed on their medical records, or had been told that they would not be offered ventilation if they contracted COVID-19.
One of those who responded said: “I have been told already that I would not be ventilated.
“I was in hospital last week with suspected COVID-19 and the doctor stated I would not be treated.
“There is no DNR in file but this was put in my discharge letter. I feel written off before I start.”
Another said: “I was contacted by my GP who was making sure I was aware that I was at very high risk and following guidelines.
“I was also asked to give permission to [put a DNR on my] medical files. I agreed to this without realising it could mean that I wasn’t offered treatment.
“This has impacted negatively on my mental health.”
A third respondent told Inclusion Scotland that disabled and older people seemed to be treated like “worthless people”, adding: “My friend had first hand experience of this last week when her disabled son died of COVID.
“He was written off in the first few minutes by doctors – and he is a healthy disabled person like my son – both have [cerebral palsy].”
More than 800 disabled people and carers responded to the survey, which ran throughout April.
About 15 per cent of those who responded – including those with and without pre-existing mental health conditions – said their mental health had been negatively affected by the need for isolation and social distancing.
And more than one in 10 of those who answered a question about employment said they feared losing their job due to the pandemic.
One of those who responded to the survey said: “Can’t get any slots for online shopping.
“Can’t get up early for the elderly/vulnerable hours at supermarkets due to the medication I take to help me sleep.
“Can’t stand in queues for long periods of time due to disability and mental health issues.
“I have no family members near me who can help.”
Dr Sally Witcher, chief executive of Inclusion Scotland, said: “Solutions once deemed ‘impossible’ are now becoming a part of the picture.
“Social care support, cut back to the bone by austerity, is getting much-needed ring-fenced investment.
“Remote working and participation is now part of the mainstream, all things disabled people have fought tirelessly for.
“If we are to see any silver lining to this terrible cloud then it has never been more important to involve disabled people in finding solutions, and ensure we retain and build on the more positive responses to this crisis.
“Inclusion Scotland is here and ready to help build the ‘new normal’ in Scotland.”
*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
A note from the editor:
Please consider making a voluntary financial contribution to support the work of DNS and allow it to continue producing independent, carefully-researched news stories that focus on the lives and rights of disabled people and their user-led organisations.
Please do not contribute if you cannot afford to do so, and please note that DNS is not a charity. It is run and owned by disabled journalist John Pring and has been from its launch in April 2009.
Thank you for anything you can do to support the work of DNS…
Official response to Covid risk to disabled people ‘was failure of human accounting’
Warning of ‘humanitarian crisis’ if governments fail to act on disability poverty
Support for user-led plan to replace universal credit… and treat all claimants with respect