The government’s continuing failure to address the harm caused to disabled people during the pandemic has led to “anxiety and hardship” and a “continuing bleak picture of marginalisation”, according to user-led research.

In a new report, Inclusion London says that “loss of control, social isolation and feelings of dependency” and the “strain of making ends meet” have had a “devastating impact” on disabled people during the crisis.

The report calls for urgent action to address problems such as food poverty, financial difficulties, workplace discrimination, and access to medicine, COVID-19 vaccines and social care. 

The Locked Down and Abandoned report – which documents disabled people’s experiences during the pandemic – says the problems have been “compounded” by a failure to engage and listen to disabled people and disabled people’s organisations (DPOs).

While the government insists it is protecting and supporting those in greatest need, it has instead introduced new laws, guidance and policies which have “actively undermined” disabled people’s “ability to protect ourselves and our rights to critical support”, says the report.

Disabled people “are struggling to understand their rights and what they should do and how to keep themselves safe”, with “fast changing, inaccessible and often confusing guidance” increasing their anxiety and distress.

Disabled women and disabled people from minority ethnic groups have been even more disproportionately affected by the pandemic and the measures taken to respond to it, says Inclusion London.

The report draws on results from a UK-wide survey of more than 550 people, as well as focus groups and workshops.

Many of those who took part said they had experienced reduced support due to high levels of staff sickness, cuts to care packages, and increased care charges.

Some saw their in-person support replaced by phone calls or their support hours cut, which stopped them leaving their homes.

Many complained about “inadequate” communication from their local council, with some reporting difficulties in securing advice or even any response at all, while some local authorities increased care charges, pushing disabled people further into poverty “and causing some to stop their care altogether”. 

One respondent told Inclusion London last September: “I used to [have] 42 hours of care per week pre lockdown. I now only have one 15 minute telephone call per day.”

Another said last month: “I advocate for several service users, one had all hours removed for going out and was refused [their] request to have them back when lockdown eased.

“Even though she was desperate to get outdoors she could not without help so has been stuck indoors since March 2020, not shielding, but trapped due to so few care hours.”

More than four-fifths (81 per cent) of those who responded said they had experienced problems accessing healthcare.

One of those who responded to the survey said last summer: “I have no support. All promises made before leaving mental health ward have come to nothing other than assessments completed, but no actual practical support.

“I’m terrified and not coping, but no one can help.”

More than a third (37 per cent) of those who responded said they were experiencing employment and financial difficulties because of COVID-19.

And more than a third (36 per cent) said they were finding it difficult to access the community, including a continuing struggle to access food, with most services and support moving online, and changes to the built environment, such as street layouts.

Employers have failed to comply with the Equality Act and have often refused to make reasonable adjustments for disabled staff who are working from home, says the report.

And many disabled people shielding from the virus have been left “without a right to furlough and were pushed to take leave or accept woefully inadequate support” through statutory sick pay.

The high costs of food, medicine and utilities has also pushed disabled people into greater poverty, says Inclusion London.

One disabled person who responded to the survey said: “Society changed overnight and barriers increased hugely from food to PPE [personal protective equipment].

“Things I rely on like gloves and wipes have increased in price x4… There is no pathway through my GP or social services for this. I feel quite abandoned.”

Among its recommendations, the report calls for an independent inquiry to investigate the disproportionately high number of disabled people’s deaths from COVID-19.

And it calls for DPOs to be involved in all COVID-19 planning and recovery work at local, regional and national level.

Inclusion London also calls for urgent increases in social care funding that will enable dignity, choice and control for disabled people, with DPOs “fully involved in developing proposals for the reform of social care”.

And it says there should be “urgent action to ensure social security provides an adequate level of income protection”.

But it warns that its evidence of marginalisation is likely to underestimate its true extent as it has been unable to reach those who do not have access to the internet or are living in institutional settings.

News provided by John Pring at www.disabilitynewsservice.com/ 

11 February 2021

The minister for disabled people has been told by 10 user-led organisations (including Disability North) of their “serious concerns and disappointment” about his efforts to engage with disabled people on the government’s proposed national disability strategy.

The letter from 10 members of the Our Voices* group of disabled people’s organisations (DPOs) raises concerns about Justin Tomlinson’s “disjointed and somewhat chaotic approach” and the lack of time given to disabled people to influence the strategy through his new national survey.

It will add to growing pressure on Tomlinson, following similar concerns expressed last month by other DPOs who said they were “shocked and dismayed” by the government’s failure to engage with them.

The 10 DPOs, led by Disability Rights UK, have called on the minister to postpone the release of the strategy – currently planned for the spring – until the summer.

They say this week in their letter that the minister’s new national disability survey is “unfocused” and asks “broad questions about the experiences of disabled people” without any reference to the broad themes used in other recent attempts at engagement.

They say there is no possibility that the results of the survey could be translated into “meaningful insight” on what should be in the national strategy, and that it includes “no mention of the strategy at all” and “in no way supports genuine co production”.

They also tell Tomlinson that they are reluctant to encourage their members to take part in the survey as it is “not clear how it will support the development of the strategy”.

The letter also raises concerns about the length and accessibility of the survey and its intrusive nature.

The Our Voices group add concerns about Tomlinson’s decision to cancel the last two meetings of his new DPO Forum, just as he was supposedly seeking the views of disabled people and their organisations to feed into the strategy.

And they say they are concerned that Tomlinson has instead been consulting closely with large charities not run by disabled people, through the Disability Charities Consortium.

It adds: “Our organisations truly represent disabled people and our lived experience is sadly underutilised by government.

“We should be the first contact government make to understand the views and experiences of disabled people, with other organisations such as disability charities bringing their perspective, but not being the first port of call.”

The letter says the deadline for survey replies to feed into the strategy – 13 February – is also a “serious issue”, and they tell Tomlinson that it is “imperative that more time is allowed”.

They say the disability strategy must “reflect the lived experiences of disabled people” but that they have been “left with grave concerns about whether this will be achieved with the current approach being taken”.

The Cabinet Office had not responded to a request to comment on the letter by noon today (Thursday).

*Our Voices is a group of chief executives and policy leads of 14 DPOs – DR UK and 13 of its members – which have “come together, since the start of the pandemic, to promote the interests of disabled people and to provide mutual support to each other”.

Lynne Turnbull, its acting chair, and chief executive of Disability Positive (the new name for Cheshire Centre for Independent Living), said: “The group has been a terrific way to collaborate with other disabled people’s organisations on issues affecting disabled people during the pandemic, as well as working together to find solutions.”

The 10 members that signed the letter are Disability Rights UK, Disability North, Disability Peterborough, West of England Centre for Inclusive Living, Wheels for Wellbeing, Living Options Devon, Leicestershire Centre for Integrated Living, Disability Sheffield, Breakthrough UK and Disability Positive

News provided by John Pring at www.disabilitynewsservice.com/ 4 February 2021

Carers UK have confirmed that unpaid carers have now been included in priority group 6 of the continued Covid-19 vaccine rollout. Some carers may be higher up the list if they are over 65 years of age. The government list of the groups is available here.

In readiness for this it is advised to please let your GP know you are a carer and ensure you have been placed on their Carers Register. You will also receive a free flu jab.

If you are an unpaid carer, please make sure your doctor knows this – as you may get the vaccine earlier than you would have.

For more information, go to https://www.carersuk.org/help-and-advice/coronavirus-covid-19/covid-vaccine-faqs

 Friday 29th January 2021