Covid-19 and living with a learning disability – the importance of support
Over the coming months, we’ll be hosting a range of blogs from researchers, practitioners and campaigners. These contributions will offer expert reflections on how the benefits system has responded to COVID-19 and what this means for claimants and those financially struggling.
In this guest post, Neil Carpenter reflects on the experience of people with learning disabilities he works with as a volunteer advocate. Neil’s blog demonstrates the centrality of support that proves so crucial to many currently receiving assistance from the government or the voluntary and community sector. In response to COVID-19, these systems of support have been disrupted or changed in a range of important ways. In the new year, WASD will be publishing a new report on how the coverage and quality of support available to benefit claimants has been affected since the start of the pandemic.
Since 2012 I have worked for Cornwall Advocacy as a volunteer advocate for adults with a learning disability. In normal, pre-Covid-19 times, I would go into day centres, help to run a drop-in advocacy session and visit people in their homes. In recent years, the focus of most of my work has been on benefits issues, principally Personal Independence Payment (PIP) but also Employment and Support Allowance and Universal Credit. I have been involved in preparing applications, challenging decisions at the Mandatory Reconsideration stage and taking cases to tribunals.
Covid-19 has, of course, altered all that for me. With normal face-to-face contact virtually eliminated, the support system for someone with a learning disability has been disrupted. My regular direct contact with families, support workers and day centres which have had to close has been replaced by occasional contact, emails and phone calls.
Some come through the dislocation to support despite the difficulties, as two examples from my benefits work illustrate.
Jenny (not her real name, as is the case with anyone else mentioned in this blog) was due to attend a court-based tribunal in April 2020 to appeal against the DWP decision not to award her PIP. Because of Covid-19, the tribunal obviously could not take place but in May we were offered the option of having it conducted over the telephone.
In normal circumstances, I would have driven Jenny to the courtroom and provided her reassurance throughout the hearing. Such direct reassurance was impossible in the phone-based hearing that was proposed: because of Covid-19 restrictions, Jenny had to speak from her home on one phone while I was linked to her and the appeal panel from my home twenty miles away. This clearly was not ideal for her but we decided to go ahead because of her financial circumstances and the fact that using the phone would probably expose her problems in oral communication which, in turn, would make a successful appeal more likely.
That, thankfully, was the outcome at the tribunal: Jenny was awarded PIP in both Daily Living and Mobility, making a huge difference to both her financial situation and mental health. Covid-19, however, had made it all far more difficult: our meetings before the tribunal had to be in a park on days when the weather was set fair and, in opting for the phone-based tribunal, we found ourselves, with some reluctance, taking a gamble.
My second example concerns David who, like Jenny, found himself facing a tribunal in the early summer months of 2020 but who – unlike Jenny – was someone I had never met before. In normal times, if the person concerned wasn’t someone I already knew, we’d spend two or three meetings getting to know each other and slowly building up the case. Because of Covid-19, that approach was not an option and, instead, the PIP case was put together through extensive emails and phone calls with David’s mother.
Our tribunal submission was sent off before I had even met David – a far from ideal situation – but was successful: the DWP in effect ‘settled out of court’, giving him a higher award than the Disability Living Allowance he had previously received.
These experiences of Jenny and David illustrate the problems Covid-19 has created for people battling the benefits system but their everyday lives have also been affected. Some issues have been addressed – for example, a lack of clear guidance on the meaning of complex rules, such as those for lockdowns, has been tackled very effectively not just in Cornwall but across the country by excellent Easy Read material produced by Cornwall People First, a self-advocacy organisation based in the county. Other issues, however, have not been exposed and rather than generalise or focus on statistical detail, I’d like to bring out those problems by concentrating on two more people with whom I work.
Ben has autism and fibromyalgia among other conditions. Pre-Covid-19, he regularly attended an excellent day centre on Mondays and Thursdays. As well as keeping him in touch with other people, it provided invaluable activities and support, at the same time putting in place two cornerstones for the structure of his week.
From March to September 2020, the centre was closed temporarily – at first because of lockdown and then while staff worked through the complexities of complying with Covid-19 regulations. From the middle of September Ben went into the centre once more but for two different days a week and in conditions (operating in a ‘bubble’ and having no communal areas available) that seemed very unfamiliar to him. From early November, for very good reasons the day centre could only offer him three two-hour slots on different mornings. Although Ben understood the logic behind the changes, each time he found the loss of a reliable routine disorientating.
He has been equally disorientated by the way the world outside has changed. As he doesn’t use the phone, having to use that method to contact his surgery with the help of his support worker has been complicated and stressful. He cannot go into his local shop, partly because of its new layout but also because of increased anxiety over how closely people might approach him. More anxiety was created by face masks: he felt physically uncomfortable wearing one himself and confused by seeing them covering other people’s faces. On top of this, being encouraged to pay in a contactless way was not just unfamiliar but alien to him.
Covid-19 has also posed problems for his support. His Care and Support Plan states that he should be receiving a combination of support from a care agency and a Personal Assistant (PA). After he lost his PA in February, he was ready to interview someone who seemed likely to be a very good replacement. She, however, dropped out because she had an elderly family relative and understandably did not want to take the Covid-19 risks that a new PA position would entail.
The care agency has kept him going but it too has had problems and for a short period in April, it had to cut the number of hours Ben received because of staff needing to self-isolate. Difficulties like this, combined with the lack of a PA, have meant that, at a time where the world has undergone massive change, he has been seriously under-supported.
All these changes – to his day centre, the outside world and his support – have left him closer to isolation and, at points, overwhelmed.
A different, if shorter, example of the effect of Covid-19 concerns Jonathan. He previously lived happily in residential care and attended the day centre, also for two days a week. When the centre had to close temporarily, Jonathan, through watching the news of care homes on television, became convinced that he would die if he stayed in residential care. Being enclosed at home and away from the network of support provided by his day centre, he began to refuse to take his medication, became aggressive, was sectioned and as staff were no longer able to manage him, he was moved to an acute psychiatric admissions unit. That move was short-lived and he has since moved again to a secure residential setting in Devon, many miles from those who know him.
Jonathan’s plight is a reminder to us all. Jenny, David and Ben only just came through the difficulties Covid-19 has created for people with a learning disability, both in the benefits system and in everyday life. Others, however, like Jonathan will have fallen through the cracks that Covid-19 has widened in what should be a support network. Across the UK he is probably one among thousands who continue to be overlooked by our government.
This blog was written by Neil Carpenter who is also the author of ‘Austerity’s Victims’. His book aims to show how adults with a learning disability have been affected, pre-Covid-19, by UK government austerity measures since 2010 and to bring their situation into the open.
Contact on Twitter: @NeilCarpenter14
The links below show where ‘Austerity’s Victims’ is available.
Print version: http://www.amazon.co.uk/dp/1984977601