Written evidence submitted by WinVisible (COV0106)
1 May 2020
Thanks to the Committee for your invitation. We also touch on shielding, social care and benefits which are related to food supply. Many older and disabled people rely on support to cook and eat food, or get it indoors, even if it is dropped off outside.
WinVisible is a grassroots multi-racial organisation with a UK-wide network, enabling disabled women to have a voice, and providing self-help information, peer support, advocacy, campaigning and other activities. Since 1984, we bring together women who are refugee, asylum-seeking, UK-born and immigrant, with visible and invisible disabilities; older and younger, disabled mums and disabled carers, lgbtq+ and more. We campaign against discrimination, including benefit and care cuts; social care charges taken from our disability benefits, and for benefit and healthcare rights regardless of immigration status. In an inaccessible and prejudiced world, coping with disability and ill-health is hard work. We support the international call for a Care Income for care work which we do for ourselves and other people, and for animals and the natural world.
The reality for disabled women, the majority of disabled people, is that the measures against Coronavirus are threatening our lives through starvation, lack of social care daily living support, including with eating, and denial of medical treatment including hydration.
This crisis came on top of years of cuts which hit disabled women/BAME communities hardest, and after many thousands of women, especially pensioners, had already lost homecare (including meals on wheels or tea and food prepared by a paid carer) and other vital support services.
Disabled people, family carers and others lobbied against the Coronavirus Act’s suspension of Care Act duties which include help with meals and drinks to keep hydrated; and against denial of medical treatment, and told MPs that many people could die as a result of these policies. We fear that after the lockdown, many people will be found dead in their homes from lack of food/water and care.
Instead of prevention, the government chose the “herd immunity” approach. Which people did the government think are expendable? The Prime Minister told the public to “prepare to lose loved ones”. Why did they not adopt methods successfully used in other places -- such as Taiwan (near mainland China) where very few people have died and where there was no lockdown?
Access to food
Many pensioners and thousands of other people with serious health conditions who are self-isolating at home for at least 12 weeks, are not included on the government’s “clinically vulnerable” list for help with delivery of food and medicines. Even some who are, are left to fend for themselves. Registration for the list is online, which many people can’t access, including visually-impaired pensioners who rely on phone contact. Nationally, at least 1.5m people are missing food, and more would starve without the unwaged family carers, volunteers, Muslim and other charities delivering meals.
Disabled women in our network in Brent, Camden, Greenwich, Newham, Southwark and outside London, many of whom are women of colour already suffering discrimination, have told us they are unable to book food deliveries online as slots are not available, even after they tried various ways to get through to supermarket staff. They can’t stand in queues at supermarkets.
The “special shopping hours” are not accessible. Sainsbury’s advertised a dedicated shopping time 8am-9am. This is ridiculous for disabled people who need time to get ready in the morning, especially if we are unaided, or for family carers who are assisting with morning washing and dressing at that time. A more accessible time would be early afternoon, but as that is a peak time for the company, we get the message that we don’t count.
One woman describes the situation for her family and neighbours:
“Both my son and myself have a letter to shield for 12 weeks. I am also carer to my son whose issues are more severe. He has several stomata that need attention and changing. Despite being shielded for the last 4 weeks, and having the letter, our names were not added to the supermarket list until last week and that took a number of phone calls. We could not get a delivery slot until our names were added and even now – there is a waiting time of two weeks in my area to get a slot. Had it not been for friends and [well-known online company] we would have been left without food. As it is, both my son and myself have restricted diets and many things we need to eat are not available even on delivery. My son has lost his care under continuing care as no one is able to come. Our diet has become limited.
“My neighbour. She is over 70 and in late stages of cancer. Her treatment has been stopped, she has been told to shield but still has not received a letter or help. I share my food and when I have flour – it’s hard to source -- I bake bread and give her some. She has no other family or friends and has no way of getting food. She is no longer eating healthily – it’s whatever I can get her. This lack of healthy food will affect her cancer.
“My mum. She lives in Derbyshire. She has severe gastro issues and other medical issues. She is barely mobile and struggles to walk. I do not live close so can’t shop for her. I have had to call the local church and asked the vicar to arrange shopping and I will pay for it. It is a little village in the countryside so it’s hard getting shopping to that area. She cannot get a delivery slot as she has not received a shielding letter even though she should have. I am also sending her parcels from [well-known company]. It means she has to eat whatever the vicar can get, and it’s not healthy food.
“A friend of mine who has the same condition as my son and uses a wheelchair full-time. She has lost all her carers. Despite having a shielding letter she has not managed to get a supermarket slot – she got one for a couple of weeks’ time. She was so desperate that she had to go to the supermarket herself. She was nervous because there was little social distancing and she should not have been out. She says no one offered to help. She too is on a restricted diet and struggling to find food she can manage with her gastro issues.
In my area people have been asked to come in the shop one at a time. This means that anyone helping a disabled person cannot go in with them or the disabled person has to wait outside.”
Another woman who is visually impaired, reported that supermarket staff no longer provide escorted shopping. This means she didn’t have the same access as sighted customers going around the shop, seeing discounted items.
In some cases, donated food parcels have been of unhealthy, low-quality or mouldy food, with instant noodles or chocolate bars not appropriate for diabetics, foods that require long preparation and cooking, or foods which are not familiar to people’s culture. People used to get meals on wheels. With social care cuts the quality declined and these have been largely phased out and replaced by shopping yourself.
Appalling news about National Shielding Helpline
Given the government’s terrible track record, we knew that the support offered to people told to “shield” was likely to be poor. But the truth revealed by a whistleblower about the National Shielding Helpline is worse than feared. This helpline should have been staffed by directly-employed public sector staff with experience of similar situations. The helpline is run by the private contractor Arvato with lax systems and call centre staff given hardly any guidance on what situations to refer on. The whistleblower told about a woman with a learning disability who confided that she was being abused by a man in the household. She was not offered immediate support, instead afterwards staff laughed at her cutting up crisp packets to keep herself occupied at home. Other callers with support needs were fobbed off. When Arvato staff did call adult social care departments, they were often not able to get through. Given that food supply has been the most urgent problem, it is likely that people calling the helpline about hunger have not been properly helped either.
The government’s introduction of sweeping powers under the Coronavirus Act, opened us to more discrimination. Rather than making social care a priority alongside the NHS, duties under the Care Act were suspended. (The Labour Party did not vote against this.) This has hit disabled women and men living alone who don’t have friends or family helping us, disabled children and their mothers, and other family carers of autistic and other disabled adults where day centres and colleges they attend are closed and no support is offered.
Paid carers are not getting protective equipment, some have quit for fear of catching COVID-19 from service users or on public transport to visits. Some disabled women have reported not getting homecare visits which they rely on to get out of bed, or fewer visits than usual. They are restricting their drinks and staying in bed as they don’t have assistance for the toilet as needed – leading to kidney infection and pneumonia.
In March, we wrote to Camden adult social care, the local authority where we are based, asking them to consider the people who dropped out of social care services in recent years due to unaffordable charges. The Council replied with the usual channels for emergency referral to the duty social worker. Yet only the Council knows who all those people are and where they live, and could do outreach to people who need support, based on Council Tax and Housing Benefit information they hold.
We want councils to follow Hammersmith & Fulham’s example. They are the only Council in England to have free homecare and to have ring-fenced the Independent Living Fund. Their COVID-19 response included contacting disabled people directly by letter and phone, not relying on residents to look online. Council staff told people that there will be no change in service provision, and asked what people need.
Councils are now hiking up care charges but also refusing to do financial assessments, leaving some women impoverished by charges. We want all care charges suspended, including because people have even more disability-related costs now, such as having to buy food from corner shops which are more expensive.
Disability benefits and Section 4 support
Decent benefits are important so people can afford healthy food and special diets. Some temporary benefit changes have been made, including continuation of disability benefits, no work conditions and sanctions in Employment and Support Allowance (ESA). Also suspension of face-to-face assessments, which in any case are discredited (see Work and Pensions Committee inquiry into ESA and PIP assessments).
But we are worried by the switch to telephone interviews to assess new claims (such as DLA to PIP), that people will be disadvantaged and scored down. It is very stressful to be put through disability benefit assessments, people should be able to access benefits without stress. With telephone assessments, people get a call while alone, may be asked for important information at a time when they are unprepared and unsupported, and could be assessed without supporting information from GPs and other professionals, so will lose out. Those of us who are survivors of child abuse, domestic violence, rape, war and other trauma find it especially stressful to talk to a stranger about why we need disability benefits where we often have to disclose very personal information.
Universal Credit personal allowance has been increased by £20 a week, but still cuts benefits compared to before, through the five-week wait, loss of severe disability premium, the cut to disabled child element, and many other features. Employment and Support Allowance has not been increased, which from April 2017 was already cut to JSA level for sick and disabled people in the Work-Related Activity Group (£74.35). This is far below even the Statutory Sick Pay (£95.85) which people rightly complained is not enough to live on. Neither has Carers Allowance been increased. The government requires family carers to do 35 hours a week for £67.25 (England rate), while accepting care provided remotely.
Disabled women seeking asylum are barred from getting disability benefits. Global Women Against Deportations (GWAD) highlights that though the government announced Section 4 support for “failed” asylum seekers, offering accommodation and financial support, many fear being at risk of deportation if they come forward. Cristel Amiss from GWAD said: “It is a very genuine worry. . . that if they go to the state for help they can be a target down the line. The virus is very quick at spreading and asylum seekers are in particularly difficult situations, usually in hostels with people from many different countries and backgrounds living close together. Those that are on asylum support get just £37 a week and are often living in overcrowded asylum housing, sharing bathrooms and a kitchen which make it almost impossible to keep yourself safe and follow isolating rules.”
We are supporting the urgent demand for a Care Income Now! so that caring for people and the natural world – care work we do for ourselves and for others – becomes the priority. Scrapping HS2 (£106 billion) and Trident (£205 billion) would help fund this.
In the meantime we are supporting calls for immediate increases to disability benefits and to Child Benefit and urgent access to food, daily living support and medical treatment for all.