Disabled people’s organisations (DPOs) from across England have described the “horrendous” and “relentless” challenges they faced during the early months of the pandemic because of the failures of the UK government and local authorities.
The DPOs told researchers of the lack of “coherent and clear advice” provided by government about many aspects of the pandemic.
This included “vital” advice on direct payments (DP) and the employment status of personal assistants (PAs).
This left DPOs having to “both source accurate information and disseminate it” to disabled people in their communities.
But the report also highlights how central government’s failure to place disabled people’s rights at the centre of its response to the pandemic – for example through the lack of accessible information – created more work for DPOs.
The report is based on the experiences of 20 DPOs in England in the first six months of the pandemic, and was compiled by the disabled people’s and service-user network Shaping Our Lives (SOL).
It is one of four new reports, published by SOL and funded by the National Lottery Community Fund, on the impact of COVID-19 and the regional and national lockdowns on disabled people and their organisations.
One DPO told SOL: “We had a horrendous six weeks early March through to mid-April, swamped with calls from PAs and their employers wanting information that nobody had, wanting guidance that nobody could give us, on where to get PPE [personal protective equipment], information on shielding, ’what do I do about furlough’.
“It felt relentless and endless.”
Another said: “We lost our DP advice service when the contract was given to a larger agency, but still have a lot of clients on DPs and so we had a lot of interaction because that organisation sent out no communications.
“DP users were coming to us for help and advice about things like statutory sick pay and PPE.
“We have had quite a few battles with the local authority about getting good information to this group.”
The report adds: “This case study was echoed by organisations all over England.
“At a time when Disabled people managing their own care needed accurate and urgent advice as employers none was forthcoming from national or local statutory bodies.”
Because there was no single source of public information, DPOs spent their resources collating information on daily living support, and recruitment and retention of support staff, says the report.
DPOs also distributed food parcels, fielded calls on helplines, set up meal services, and distributed PPE.
At the end of six months, all the DPOs – which have remained anonymous in the report – said their staff teams had been left “physically tired and emotionally drained”.
One of the key recommendations to come from the DPO research was the need for a new national organisation to provide a voice for DPOs.
The report says DPOs were concerned that the voices of disabled people were getting lost, even while their “vulnerabilities” were mentioned almost daily in the news.
They were also concerned that the extra funding that many DPOs had secured during the crisis will now “hit a cliff-edge in March and disappear”.
A second report by SOL found that regional and national lockdown measures had led to many disabled people losing their confidence.
Three-quarters of the 131 disabled people who took part in a survey for the report said they had lost their confidence as a result of COVID-19 and the lockdown measures.
And nearly three-fifths (58 per cent) said they agreed that those measures had had a negative long-term impact on their ability to live independently.
More than half (57 per cent) of those surveyed said something good had come out of the crisis, such as having more spare time, and developing skills in the use of new technology and social media.
But one of the 21 disabled people who took part in in-depth interviews as part of the research said: “I feel badly damaged. Lost all my trust and faith in human nature.
“All that wasted money spent by the government on defective PPE is scandalous. Those with disabilities are an afterthought.
“The little equality we had has totally been eroded. The help is tokenism if at all. We are left to rot and die stuck in a no-man-land limbo.
“The government don’t care it’s an illusion that they want to help. They don’t even understand basic infection control.
“You have to fight for everything you need to live day after day after day.”
The third SOL report details findings from a survey about the use of remote technology by disabled people during the crisis.
About a tenth of those questioned for a survey said they had found all the remote technologies they were asked about – telephone calls, video calls and video meetings – were inaccessible to them.
But it found there were many positives for other disabled people, including saving time and energy, helping people avoid the stress of travel, and providing a safer way for people to meet and communicate during the COVID-19 crisis.
The report also warns that these technologies should not be seen in the future as an alternative to face-to-face contact, while most of them require people to have access to equipment and a reliable internet service that may be too expensive for them.
The fourth SOL report discusses interviews with members of NHS patient participation groups.
It raises concerns that COVID-19 has been used as an excuse to “terminate patient engagement altogether, implement planned changes badly or revert to simple consultations as a substitute”.
Becki Meakin, SOL’s general manager, who wrote two of the four reports*, said the research showed that disabled people “will not just get back to normal” when the virus becomes less of a threat.
She said: “The longer-term impacts mean people will need services to get back their independent living skills and confidence.
“Even then, some disabled people may never get back to life as it was before the pandemic.”
Meakin said the research showed that many DPOs believed they would be “back to fighting for survival in a hostile funding environment” once the crisis was over, but with many more disabled people needing their support.
*The other two reports were written by Joanna Matthews, a member of Shaping Our Live’s National User Group
**For sources of information and support during the coronavirus crisis, visit the DNS advice and information page
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