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May 2020
The coronavirus pandemic has created unprecedented challenges for society and policymakers, but the effect of the crisis has been particularly acute for disabled people and their families.
This crisis has exacerbated existing barriers disabled people face, exposed new issues and highlighted where things can change quickly to create more inclusive conditions for everyone. From difficulties accessing food and essentials to a reduction in hard-won rights and safeguards as well as positive changes in the way many of us work, a huge amount has changed over the last 2 months.
Yet disabled people are increasingly left feeling forgotten.
Our research has found 28% of disabled people feel this way.
Since the start of the crisis, Scope has been speaking with disabled people and their families through our helpline, online community, services, social media, research panel, and through research polling, to understand what the important issues are.
Scope has produced this briefing to bring together these different pieces of insight and to shine a light on the scale of the effect of coronavirus on disabled people.
Disabled people and their families cannot be forgotten.
We set out a number of urgent recommendations to make sure this isn’t the case.
The outbreak has raised issues about money, essentials and rights. Leaving many disabled people feeling anxious, with concerns about:
The policy response continues to group disabled people as at risk. This adds to disabled people's anxiety. It's not clear what measures will be in place to support them, while work is done to find a longer term solution.
The narrow focus on medical vulnerability, coupled with the extremely rapid increase in demand for supermarket delivery slots and social distancing measures, means many disabled people are struggling to get hold of food and essentials.
Disabled people have, for a long time, had poor experiences using the welfare system. Difficulty in accessing benefits and delays in payments have often left disabled people financially insecure. The crisis has further highlighted existing flaws in the system and the introduction of temporary changes creates uncertainty.
The emergency coronavirus legislation relaxed the duty of care on local authorities and the requirements around detention under the Mental Health Act. It also reduced the duty on local authorities on ECHP and the timeliness of assessments. As a consequence, some disabled adults and children may be left without the care and support they need.
Disabled people face particular challenges working during the crisis, especially those instructed to shield, but there have also been positive changes in flexible working which must be learnt from. As the lockdown eases, being able to safely travel to and from work will become an increasingly important issue for the many disabled people who rely on public transport.
The Government must ensure any measures to ease the lockdown do not treat disabled people as a homogenous group who should isolate for months on end. It is not fair or viable to ask hundreds of thousands of people to isolate from friends, family and work without additional support or a clear plan for how long this might go on for.
There are ongoing and persistent concerns being raised by disabled people who require support in their homes and feel unsafe because of a lack of equipment for carers. Government must ensure the social care workforce and Personal Assistants are provided the correct PPE, so that disabled people are not put unnecessarily at risk of catching coronavirus because of needing care.
Understandably a lot of health care capacity has been driven towards ensuring people who become seriously unwell with COVID-19, but this has come at the cost of delayed treatment for other conditions. As time goes on, this is becoming an increasing concern for many disabled people as we look to move into ‘Phase 2’ of the Government’s COVID-19 recovery strategy.
DEFRA should continue to prioritise people who are vulnerable due to coronavirus. We welcome DEFRA expanding the definition of vulnerability. But, we would like to see them work with third sector organisations. And keep this definition under review.
As lockdown levels change, we would like to see systems in place to help individuals to self-identify as being in a vulnerable situation. Such as, getting food and other essentials.
Many disabled people have struggled to be able to shop in-store safely since new restrictions were brought in to ensure social distancing. While it is welcome that many supermarkets have implemented priority shopping hours for older and disabled people, more needs to be done to ensure disabled people receive consistent adjustments to be able to shop at other times.
The Government must urgently uprate legacy benefits in line with Universal Credit to remove disparities between different groups of disabled people. Over the course of the crisis, this could leave many disabled people on legacy benefits several hundred pounds worse off than claimants on UC.
Sanctions and face-to-face assessments for disability benefits have been paused. This is so the DWP can give safe and effective support to claimants during the pandemic. We believe sanctioning and conditionality for disabled claimants should be scrapped along with the five-week wait for Universal Credit, which pushes many disabled people into financial insecurity. As we emerge from this crisis, the Government should use the Welfare Green Paper as an opportunity to build on the temporary changes seen during the emergency to make permanent improvements to the system.
DHSC must be more transparent about why it has granted easements to 7 local authorities. The Government and CQC must also be more upfront about how they will drive local authorities who do apply for easements to reinstate Care Act safeguards as quickly as possible.
The Government must demonstrate it is working with NHS England and other public services to ensure standards of mental health support for disabled people are being met in light of changes to the Mental Health Act.
The Department for Education must give a clear definition of the ‘reasonable endeavours duty’ on local authorities to continue to meet the needs of children and young people with ECHPs. The Government must also demonstrate it is working with local authorities to ensure the health and educational needs of disabled children and young people are being met during the outbreak.
The Government must use the experience of lockdown to create a strategy for more flexible workplaces which will help disabled people find, and stay in, work.
The Government should make the removal of waiting days for SSP a permanent change for all illnesses. The Government should also increase the rate of SSP in line with the National Minimum Wage. Together this will boost job retention among disabled people.
Scope has been contacted by many disabled people who are concerned about the risk of contracting coronavirus, both because they are medically at higher risk but also due to difficulties being able to observe social distancing. We have also heard from many disabled people who are worried because they have had medical and surgical appointments cancelled or postponed. Disabled people fear their condition or illness deteriorating and requiring hospitalisation during the outbreak.
In addition to fears about social distancing and medical appointments being cancelled, disabled people are concerned that carers do not have adequate personal protective equipment, placing them and the people they care for at risk. There is also anxiety about the halting of healthcare that is unrelated to Covid, particularly as we enter the second phase of the Government’s recovery strategy.
The ongoing worries disabled people are experiencing are made worse by how coronavirus deaths are being reported, with “underlying conditions” frequently cited. While it is the case that certain conditions leave people at higher clinical risk from the virus, the language used is leaving many disabled people with the sense that deaths of people with pre-existing conditions or impairments, many of whom will be considered disabled under the Equality Act definition, are deemed to be less of a concern than those of non-disabled people.
This constant anxiety, coupled with a reduced independence and sense of being expendable, is leaving many disabled people feeling isolated and forgotten.
I have had so many medical appointments cancelled it’s been really difficult. Including my mental health ones, so a stressful time.
I worry about what the future will be like. The fear of losing loved ones.
I am very concerned that if I contract the virus, I may not be considered for treatment because of my complex medical issues.
The Government must ensure any measures to ease the lockdown do not treat disabled people as a homogenous group who should isolate for months on end. It is not fair or viable to ask hundreds of thousands of people to isolate from friends, family and work without additional support or a clear plan for how long this might go on for.
There are ongoing and persistent concerns being raised by disabled people who require support in their homes and feel unsafe because of a lack of equipment for carers. Government must ensure the social care workforce and Personal Assistants are provided the correct PPE, so that disabled people are not put unnecessarily at risk of catching coronavirus because of needing care.
Understandably a lot of health care capacity has been driven towards ensuring people who become seriously unwell with COVID-19, but this has come at the cost of delayed treatment for other conditions. As time goes on, this is becoming an increasing concern for many disabled people as we look to move into ‘Phase 2’ of the Government’s COVID-19 recovery strategy.
Since lockdown the largest proportion of queries relating to coronavirus received by our helpline have been about access to food and essentials. Many disabled people are ineligible for additional support set up by the government because their condition or impairment means they are not classified as “clinically extremely vulnerable”. This is leaving a lot of disabled people not included in this category, who relied on online shopping deliveries before the outbreak, are now finding that their regular slots are no longer available.
The social distancing restrictions put in place by some shops are also causing difficulties for some disabled people, such as those who need someone to support them with their shopping. Disabled people are being asked to get friends, family or neighbours to do their shopping, but this is difficult for people with no local support network.
The Department for Food and Rural Affairs (DEFRA) has recognised the need to acknowledge and support people who are not clinically vulnerable but may face extreme difficulties in accessing food as a result of coronavirus. This is a critical piece of work and the Government should continue to work collaboratively with the third sector and supermarkets to ensure that disabled consumers are protected at this time.
Looking beyond the current crisis, we also believe that there needs to be a cultural shift in how the term “vulnerable” is used by policymakers and service providers. Many disabled people do not identify as inherently vulnerable and there is a risk with using disempowering phrases like ‘the vulnerable’ or ‘the elderly’ that policies end up being designed which do not take into account that many people move in and out of vulnerable situations. This has been exemplified by the current crisis, where DEFRA estimates several hundred thousand disabled people may be newly classified as needing extra support to get hold of food during lockdown, but were not initially considered vulnerable when a purely medical approach was being applied.
I worry that I won’t be able to get food. It’s really scary.
I used to rely on online deliveries for food, however because the government didn’t include ME on their list of vulnerable people (despite it being a neurological condition like MS and it affecting your immune system), I have been unable to get on the supermarket vulnerable list.
DEFRA should continue to prioritise people who are in a vulnerable situation due to coronavirus.
This should go beyond clinical vulnerability and keep this under review during different levels of lockdown. As lockdown levels change, we would also like to see systems put in place to enable individuals to self-identify as being in a vulnerable situation in terms of getting food and other essentials.
They should do more to ensure disabled people receive consistent adjustments to be able to shop at other times.
On average, disabled people already face extra costs of £583 a month, even after receiving welfare payments designed to meet these costs (footnote 1). A significant proportion of these come from an increased use of non-specialised goods and services, such as energy and transport.
At the beginning of the pandemic the chancellor announced £350 billion of emergency measures to support people affected by coronavirus. These welcome changes represent significant shifts in financial support for disabled people. But, they also raise issues for some disabled people.
Many disabled people still rely on the legacy benefits such as Employment and Support Allowance (ESA) and the Government must not overlook them by concentrating on emergency measures on Universal Credit. The Government must increase ESA payments in line with Universal Credit to avoid some disabled people being disadvantaged.
The Government also needs to make permanent some of the changes introduced as a result of the coronavirus emergency. In particular, the removal of conditionality and sanctions for disabled claimants and removing the need for face-to-face assessments.
The Government also needs to address pre-existing issues with the welfare system which can cause financial insecurity for some disabled people. This includes removing the five-week wait in Universal Credit and developing a new component for Universal Credit to replace the disability premiums in the legacy benefit system.
It seems that there is always an assumption disabled people have someone to help them.
I was lucky to find a wholesaler who has started delivering food, but they have very limited choice and only sell in bulk which is expensive. I'm on disability benefits, I can’t afford to buy from them all the time and they don’t have everything I need anyway. So, what do I do?
The Government must urgently uprate legacy benefits in line with Universal Credit to remove disparities between different groups of disabled people. Over the course of the crisis, this could leave many disabled people on legacy benefits several hundred pounds worse off than claimants on UC.
To enable the DWP to provide support safely and effectively for claimants during the pandemic, there has been a temporary pause on sanctions and face-to-face assessments for disability benefits. We believe sanctioning and conditionality for disabled claimants should be scrapped along with the five-week wait for Universal Credit, which pushes many disabled people into financial insecurity. As we emerge from this crisis, the Government should use the Welfare Green Paper as an opportunity to build on the temporary changes seen during the emergency to make permanent improvements to the system.
Social care is a lifeline for many disabled people. But, provisions of the Coronavirus Act allow local authorities to apply to temporarily suspend important duties to meet the needs of disabled people and carers. The Act also allows health bodies to delay carrying out an assessment for eligibility for NHS continuing care. Local authorities will only have to provide care ‘if they consider it necessary’ for the purposes of avoiding a breach of the Human Rights Act. But, this does not provide the same level of safeguards as the Care Act and can be difficult for disabled people to challenge.
These powers could mean some disabled people do not have all their social care needs met during the outbreak, and care assessments for those who have new or changing care needs in this time could be delayed. This risks leaving some disabled people with only basic support, or even none at all, at a point where they may need it most.
We have also heard from disabled people who are worried that their care workers or Personal Assistants cannot get hold of the correct personal protective equipment (PPE) when delivering their care. This is putting some disabled people unnecessarily at risk of catching Coronavirus and creating undue stress and anxiety about receiving vital support.
There isn’t really much support. As an employer of Personal Assistants, I’d have to provide them with an apron, a mask, maybe a visor - there was a list of things I was told I’d have to provide if I got sick. But how do I actually get them?
DHSC must be more transparent about why it has granted easements to 7 local authorities. The Government and CQC must also be more upfront about how they will drive local authorities who do apply for easements to reinstate Care Act safeguards as quickly as possible.
Before the outbreak schools and other institutions had an ‘absolute duty’ to admit a child where they are named in a child’s EHCP. The Secretary of State for Education has now implemented powers set out in the Coronavirus Act to temporarily replace the ‘absolute duty’ with a ‘reasonable endeavours’ provision (footnote 2). Some parents of disabled children are deeply concerned that some local authorities may decide not to provide all elements of their child’s EHCP, so long as they have made ‘reasonable endeavours’ to do so.
The Secretary of State has also applied changes to the timelines for EHCP applications set out in the Act. Before the outbreak local authorities have struggled since EHCPs were introduced, to abide by the 20-week limit set out in legislation.
During the outbreak where it is not “reasonably practicable” or is “impractical” to meet that time limit because of the transmission of coronavirus, the limit will not be applied. Instead, local authorities will have to complete the process as soon as reasonably practicable or within any other time limit. Though these changes may be modified on a case by case basis, parents of disabled children are concerned, that they may be expected to wait longer before hearing the outcome of their child’s EHCP. These new time scales will also be applied to any annual review or reassessment of a disabled child or young person’s EHCPs during the outbreak.
The Department for Education must give a clear definition of the ‘reasonable endeavours duty’ on local authorities to continue to meet the needs of children and young people with ECHPs. The Government must also demonstrate it is working with local authorities to ensure the health and educational needs of disabled children and young people are being met during the outbreak.
The Coronavirus Act extends and removes the time limits for mental health detention, set out below:
These drastic changes mean disabled people experiencing severe mental health problems could be released into the community too early, without being given the support they need. Conversely, individuals may also find themselves detained for longer, risking their mental health further. It is also unclear if a disabled person detained under the Act during the outbreak can appeal at any time, or only once the Act has been repealed.
The Government must demonstrate it is working with NHS England and other public services to ensure standards of mental health support for disabled people are being met in light of changes to the Mental Health Act.
Many disabled workers have been particularly affected by the coronavirus emergency, especially if their impairment or condition means they are instructed to shield. But, we have also seen new ways of working during lockdown that offer the flexibility that can benefit some disabled employees.
The Government must use the experience of work during lockdown to create a strategy for more flexible workplaces. Helping disabled people find, stay in, and make progress at work.
But, as lockdown eases, some disabled people may be expected to return to offices and other workplaces. Many will rely on public transport to travel to work and so it is vital the Government ensures transport operators provide their staff with accurate and up-to-date guidance on assisting disabled passengers during the coronavirus emergency.
Early in the crisis the Government moved to amend sick pay regulations, specifically by reducing the number of waiting days to zero for those off work due to coronavirus. This recognised one of the flaws in the system that many disabled people had become used to before the current emergency. The Government should now make the removal of waiting days for SSP a permanent change for all illnesses.
The current rate of SSP is only £94.25 a week, an amount that is not sustainable for many disabled people. To boost retention, the Government should also increase the rate of SSP in line with the National Living Wage.
We’re all working sensibly, we’re all working from home and I’m really hopeful that now a lot of employers have gone through that massive learning curve to see that actually it is possible to work from home.
I’d gone from earning around £1,600 a month, to having only £377 a month to live on. I wasn’t ready to return to work but needed to get back because there was rent and bills to pay.
The Government must use the experience of lockdown to create a strategy for more flexible workplaces which will help disabled people find, and stay in, work.
The Government should make the removal of waiting days for SSP a permanent change for all illnesses. The Government should also increase the rate of SSP in line with the National Minimum Wage. Together this will boost job retention among disabled people.
We’re Scope, the disability equality charity. We won’t stop until we achieve a society where all disabled people enjoy equality and fairness. At home. At school. At work. In our communities.
We’re a strong community of disabled and non-disabled people. We provide practical and emotional information and support when it’s needed most. We use our collective power to change attitudes and end injustice.
We campaign relentlessly to create a fairer society. And we won’t stop until we achieve a society where all disabled people enjoy equality and fairness.
For further information, please contact Matt Corby, Lead Political Adviser.
Email: Matt.Corby@scope.org.uk