Third lockdown leaves disabled people cut off from basic support

• Disabled people struggling to get support from government, councils, supermarkets and social care
• More than a quarter (28 per cent) of disabled people think disabled people have less support available this lockdown than previous lockdowns
• Cross-party group of MPs sends letter to Cabinet Office calling for emergency support package for disabled people
• Concerns about effect of isolation as more than half of disabled people living alone have seen no friends or family outside their support bubble since March last year
• Calls for urgent boost in support for disabled people and higher priority in vaccine roll-out

Disability equality charity Scope has published new research that reveals huge numbers of disabled people are going without vital support and leaving many fearing they could be in this situation for many more months without urgent action.

The research has found that almost a year into the pandemic, despite almost two-thirds (59.5 per cent) of all Covid-19 fatalities being disabled people[1] and repeated warnings to government, fundamental problems getting support have not been fixed.

The Opinium survey of more than 1,000 disabled people also revealed 3 in 4 disabled people (75 per cent) plan to continue shielding until after their second vaccine dose. This means without action, many who have been cut off from friends and family for a whole year, could be facing up to another year of extreme isolation, without access to vital support such as food deliveries and social care.

The survey found 1 in 5 (20 per cent) disabled people aged 18 to 54 have shielded out of personal choice despite not being considered Clinically Extremely Vulnerable, meaning they will be in the lowest priority groups for the vaccine. Asked why they had decided to shield despite not being specifically advised to by government, many survey respondents said they had fears their health conditions did put them at higher risk.

Scope - backed by the All Party Parliamentary Group (APPG) for disability - is calling for an emergency support package for disabled people to urgently address these problems. The charity is also urging government to prioritise all disabled people who are shielding - including those who are shielding but not classed as Clinically Extremely Vulnerable - for the vaccine roll-out.

The new survey found:

• More than a quarter (28 per cent) of disabled people think disabled people have less support available this lockdown than previous lockdowns
• Only 1 in 4 (25 per cent) disabled people have been able to get all the support they’ve needed from supermarkets to keep themselves safe
• Just 1 in 10 have been able to get all the support they’ve needed from their local council (11 per cent) and the UK government (10 per cent)
• Only 1 in 20 (6 per cent) have been able to get all the support they've needed from social care. 1 in 5 (20 per cent) feel unsafe about PAs and carers at home.
• 44 per cent of disabled people have had difficulty getting deliveries from supermarkets, and more than half (53 per cent) feel unsafe visiting a supermarket
• Almost 3 in 5 (57 per cent) disabled people who live alone haven’t seen anyone outside their support bubble since the pandemic began, and 1 in 5 (20 per cent) haven’t even seen their support bubble.
• 75 per cent of disabled people will continue shielding until they’ve had 2 doses of a vaccine
• Almost 1 in 4 (23 per cent) are concerned they won’t be able to access a vaccination centre

A separate survey carried out by Scope with 183 disabled people found more than a third (36 per cent) said their health has been impacted due to issues accessing food during the pandemic [2]

James Taylor, executive director of strategy, impact and social change at Scope, said:

“Many disabled people have been shielding for almost a year, cut off from loved ones, mental and physical health unravelling. Almost two-thirds of all those who’ve died from Covid-19 were disabled people. Despite these sacrifices, disabled people have been continuously ignored and forgotten by the government. It’s shameful that a year into this, so many are still having to struggle to get vital support with basics such as food and social care.

“A year of anxiety has pushed many to the brink of burning out completely, as they wait to be called up to get the vaccine. But many disabled people still have no idea when, how or if they’ll be getting the vaccine. Despite knowing they are more at risk, many are facing up to another year of unbearable anxiety and isolation, because the increased risk they face has been ignored in the vaccine priority.

“This cannot continue. We need an emergency support package to protect disabled people’s health and finances.”

Scope wants the government to protect and support disabled people and their families. It must:

• Prioritise disabled people who are shielding - including those who are shielding but not classed as Clinically Extremely Vulnerable - for the vaccine
• Make sure information about the vaccination as well as vaccination centres are accessible
• Clarify guidance for disabled people who can’t have the vaccine
• Work with supermarkets to waive delivery costs and reduce minimum spends on online delivery slots for disabled people
• Provide clear, accessible communication about supermarket slots and priority hours
• Reintroduce food boxes for those still shielding and ensure the boxes meet the recipient’s requirements

Case studies

Natasha Coates, 25, from Nottingham, is an elite disability gymnast who has won 22 British titles. She has mast cell activation syndrome and autism. Natasha has been shielding since March last year. She is unable to have the vaccine as she is at high-risk of a life-threatening allergic reaction. She says there is not enough information for people who can't have the vaccine. In the past fortnight, Natasha had 2 supermarket deliveries cancelled last minute, resulting in her not having enough food.

She said: “I can’t deal with this constant Covid anxiety anymore. I am so burnt out and I’m not sure how long I can cope with shielding.

“I don’t know when or if I will be able to have the vaccine, and I've had no information about what I should do. Do we just have to wait for herd immunity? If so, is there a time scale for that? I’m worried about catching the virus, and the effect on my mental health from having to shield for so long.

“Our weekly food delivery was cancelled 3 hours before it was due to arrive. We managed to get a Tesco delivery, but the same thing happened again. I felt so vulnerable stuck in my house unable to just get the basics.

“I ended up having to post in my local Facebook group to see if anyone was going shopping, and if they could pick up a few things for me and I would transfer the cost to them. I felt so helpless and embarrassed. I’m a 25-year-old woman who currently can’t even source food for myself and my parents. I can’t tell you how much that hurts.

“I was overwhelmed with responses and we had things dropped off that same evening. Even my postman offered to help. I felt so vulnerable, and people were so incredibly kind. So I have milk for my cup of tea and my faith in humanity has been restored.

“But I shouldn’t have to rely on the kindness of strangers to get food. There needs to be much more support for shielders like me.”

Charles Bloch, 26, lives in Coventry and works in digital marketing. Charles is registered blind and uses a guide dog called Carlo. Charles will likely have to wait until the autumn to receive his first vaccine, meaning he may not be fully vaccinated for another year. He feels the disabled community are being overlooked in regards to vaccine prioritisation and that, despite not being considered Clinically Extremely Vulnerable, he is at high risk due to needing assistance shopping, and his lack of depth-perception making it hard to social distance.

Charles said: “It’s not a difficult concept that disabled people are at more risk, so I don’t understand why they are being totally forgotten about in the vaccine rollout.

“I am not classed as clinically extremely vulnerable, so I am not provided with any extra help, and it is discretionary to me to shield if I believe it is needed.

“Being under 30, I won’t be offered my first jab until September, and then the second jab in December, meaning another whole year of staying and working from home, not being able to see my vulnerable family members, friends and being scared of mixing with people outdoors.

“I get very anxious about having a lack of depth perception and not knowing exactly how socially distanced I am, so having that deep fear for another year is really disheartening. Being able to get the vaccine sooner would mean so much.

“I believe disabled people are just as at risk, if not more in some case, as those that are on the front line and key workers, because we require close contact help and support.

“A lot of us have had to do without that support throughout the whole of the pandemic, and had to struggle on our own and put ourselves more at risk.

“I might need a sighted guide or assistance when shopping, but due to social distancing regulations, that’s no longer deemed acceptable. This makes going food shopping more stressful and difficult, and it takes longer so I’m having to spend more time outdoors and unnecessarily mixing with more people.

“I managed to get priority supermarket slots in the first lockdown, and was getting regular updates about when I had special access to book a slot. But I haven’t received any of these emails during this lockdown, and it appears that you now only qualify if you purchase almost every week when instructed to do so. This isn't exactly helpful when I live alone and don't always want to put a big food shop order in online every week, it's more than likely to be bi-weekly in my case.”

Emma Vogelmann, 26, from Royston in Hertfordshire, has been shielding since March last year, which has taken a big toll on her mental health. She has the condition Spinal Muscular Atrophy type 2 and is classed as CEV. Emma uses a ventilator as a result of previously contracting swine flu in 2009. Emma has had her first dose of the vaccine this week, but now has to wait 3 months for her second dose, and won’t stop shielding until after it. Emma employs a team of 6 personal assistants (PAs) and is concerned about the possibility of catching the virus through one of them as an asymptomatic carrier. She has been trying to sort out vaccines for her team of PAs, which has been complicated and stressful because of the lack of clear guidance about this.

“Receiving the vaccination will mean an easing of the constant fear I’ve had for nearly a year. I could count on one hand how many times I’ve left the house in the past year for non-medical reasons. Not being able to see my brother has been very hard. He's been very worried he could be an asymptomatic carrier. Being able to see him and see the weight taken off his mind will make an enormous difference.

“Because I have carers who come in every day, I know they are being as careful as they can, but there is always a risk that they pick something up. Knowing I am safe from an asymptomatic carer bringing it in will make a difference. When I got swine flu, it was through an asymptomatic carrier.

“If there's even a remote chance one of my staff have been in contact with Covid-19, they've told me and got tested. I know a lot of carers that wouldn't do that. It's made me feel a lot safer. But at times I’ve also had to go without the support I've needed in order to keep myself safe from the virus. There have been times I haven't been able to get any cover, because of a potential Covid-19 contact, which has caused me a lot of stress and worry.”

References

1. Data published by the ONS. Coronavirus (COVID-19) related deaths by disability status, England and Wales: 2 March to 14 July 2020

2. Scope polling of 183 disabled adults and parents of disabled children, 6 to 12 January 2021.

All other statistics, unless otherwise stated, from an online survey of 1,005 working age disabled adults carried out by Opinium on behalf of Scope between 20 and 22 January 2021, weighted to be nationally representative.