Written evidence submitted by the Oxford University Disability Law
and Policy Project (MRS0341)
About the Oxford University Disability Law and Policy Project
The Oxford University Disability Law and Policy Project develops initiatives to increase academic teaching and research on disability and related issues at its intersection with law and policy. In doing so it aims to bring new perspectives to academic analyses of law and policy and to generate policy-relevant research which better engages with the issues faced by our diverse population of people with disabilities.
About the Bonavero Institute of Human Rights
The Bonavero Institute of Human Rights is a dedicated institute within the Faculty of Law at the University of Oxford. The Institute is based at Mansfield College, Oxford. Here we undertake worldclass research in the field of human rights law and foster public engagement in human rights issues beyond the academy. As part of its mission, the Institute will establish a vibrant community of graduate students, host outstanding scholars of law and other disciplines, and collaborate with practitioners engaged in the most pressing contemporary human rights issues around the world.
About the Authors
This submission is authored by Dr Marie Tidball (Director of the Oxford Disability Law and Policy Project), Dr Christos Kypraios, (Programmes Manager of the Bonavero Institute of Human Rights) Daniel Holloway (Futures Thinking Network, The Oxford Research Centre for the Humanities), Sarah Stephenson-Hunter (Staff Disability Advisor) Toel Koyithara (MPhil Candidate), Lucinda Ferguson (Associate Professor of Family Law), Charlotte Kelly (DPhil Candidate), Sara Scott (Disability Adviser), Paul Scarrott (Self-Advocate, My Life My Choice). Contributions have also been received from academics working in disability law, policy, disability studies and related areas, along with other researchers, employees, graduates and undergraduates and alumni with disabilities of the University of Oxford. They are signatories to the submission, which they endorse.
We, the undersigned academics working in disability law, policy, disability studies and related areas, along with researchers, employees, graduates and undergraduates and alumni with disabilities of the University of Oxford write to submit the following evidence to your inquiry on the unequal impact of Covid-19 and the Coronavirus Act 2020 on people with a disability.
The unequal impact of the coronavirus crisis outlined below comes after a decade of austerity. In 2017, the United Nations Committee on the Rights of Persons with Disabilities raised concerns about the treatment of disabled people during this period in their Concluding Observations on the initial report of the United Kingdom. Our submission reflects the themes of articles of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), ratified by the United Kingdom in 2009. It does so to demonstrate the widening inequality for disabled people during the coronavirus crisis in all parts of our lives, and to reflect the insufficient incorporation and uneven implementation of the Convention across all policy areas, by the government, in response to the crisis.
General principles , General obligations, Equality and non-discrimination, Equal recognition before the law (Articles 3, 4, 5 and 12) - The Covid-19 pandemic has led to far reaching changes to law and policy affecting disabled people in the UK, impacting upon every aspect of our daily lives. From restrictions around the 12 week ‘shielding’ of vulnerable individuals to reducing the number of professionals needed to make a hospital order under the 1983 Mental Health Act, and ‘easing’ the requirements on local authorities to provide care for disabled people under the Care Act 2014, the Coronavirus Act 2020 has wide ranging and damaging implications for the rights and freedoms of disabled people in the United Kingdom. The government’s policymaking in response to the pandemic has failed to fulfil its own Public Sector Equality Duty under the Equality Act 2010 with respect to disabled people and its obligations under the United Nations Convention on the Rights of People with Disabilities.
The voices of disabled people have been largely excluded, and the impact on our lives has been forgotten. There has been a failure of the government to embed social and human rights models of disability in its pandemic response. This is writ large in its approach to determining its shielding list – those people who should stay at home for 12 weeks. Many of those who ought to have been included in this register have been omitted and face no access to food without leaving their homes despite being severely disabled and being affected by chronic illness. The government’s messaging that “this affects everyone” misunderstands the differential impact of the extensive changes to daily life for disabled people. There has been a failure to properly support disabled people to cope with these changes and for reasonable adjustments to be made where appropriate and safe to do so. This has led disabled people to feel like they are not important, and to lose trust in government.
Awareness-raising and Accessibility, Freedom of expression and opinion, and access to information (Articles 8, 9 and 21) – There has been a failure of the government to promote positive perceptions and greater social awareness towards persons with disabilities in the context of the coronavirus pandemic. People with mental ill health and neurodivergent people have experienced increased stigma and shaming from the wider public as a result of unclear communication around the regularity and type of permitted activities to leave the home. Although the government has now changed its policy to permit more frequent exercise for individuals with learning disabilities, autism and mental ill health, the lack of early guidance on this and subsequent inconsistency in communication about this at official briefings means that messaging about this change has not filtered through to other members of the public. The Government’s advice on exercise and people not congressing outside has led to benches being taped up in some parks and walkers told not to use them. This has caused huge problems for those who suffer from physical disabilities, including mobility problems such as Cerebral Palsy, who require a seat to rest when walking outside. Some people with learning disabilities have also raised the issue of not being able to take their daily exercise due to shortages in care staff. In a society where those with invisible disabilities regularly face the challenge that they “didn’t look disabled” when using accessible facilities, this has led to extreme anxiety and people often deciding not to take the exercise they need. This is further exacerbated where autistic individuals may respond to being challenged by losing verbal communication or having a meltdown, both of which are regularly misinterpreted as antagonistic.
These issues have been exacerbated by the failure of the government to ensure official communications are expressed in accessible formats and technologies appropriate to different kinds of disabilities in a timely manner and without additional cost for those with hearing and visual impairments as well as those with learning disabilities. This has left these communities, isolated, scared and unable to access public health guidance, including Britain’s deaf community, as the United Kingdom government, unlike counterparts from around the world, has not included British Sign Language interpreters in its daily briefings broadcasts. Some have assumed they are high risk but have not had any direct communications about whether they are expected to shield or not. The lack of information directed at disabled people reduced the government’s ability to facilitate portrayal of persons with disabilities in news media coverage of the pandemic. One self-advocate with a learning disability said the government needs to make it ‘easy to include us in the news and not leave us under the carpet’[1].
Health, Situations of risk and humanitarian emergencies, Habilitation and rehabilitation, Personal mobility (see Articles 25, 11, 26 and 20) – The ONS have reported the widespread anxiety amongst disabled people about the effects of the coronavirus pandemic. One colleague described the ‘anticipatory grief’ and fear they felt at the prospect of being treated under the NICE Guidelines ‘frailty’ score. Whilst these Guidelines have now been amended following a public outcry, this episode left disabled people in doubt about their right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. Other examples of this continue to emerge. Evidence is mounting on the inconsistency with World Health Organisation standards of the Government's guidance on combating coronavirus in care. This includes lack of adequate PPE for home care workers and other health professionals. There is also increasing concern among the autistic and deaf communities over any potential advice or legislation in relation to compulsory use of face masks. Both groups rely on lip reading for communication, and autistic people are additionally concerned that sensory overload from wearing a face covering would mean they are even less able to go outside during lockdown. People with mental ill health, autism and learning disabilities and carers have raised issues around the availability and access to services upon which they rely, such as mental health teams, and learning assistants. The government has not taken steps to ensure personal mobility with the greatest possible independence for persons with disabilities during the crisis. Many people are finding it difficult to access services to acquire new hearing or mobility aids, in the community, and to get access to their repair. This is affecting their independence at home and in the community.
Right to life, Statistics and data collection, National implementation and monitoring (Articles 10, 31 and 33) – Disabled people are concerned that those dying from Covid-19 in the community and in care homes and supported living accommodation for the elderly, those with learning disabilities and autism, are not being recorded and accurately included in the overall numbers of deaths reported nor in the data on the number of people infected with Covid-19. Although it was reported this week that there have been 4,000 Care home deaths over the last fortnight, disabled people are concerned that this does not cover the loss of life over the whole period of the pandemic across all institutions and community settings. We have seen the tragic rates of morbidity and infection amongst BAME groups, there is an urgent need to record and make public death and infection rates of people with different types of disabilities and long-term health problems due to Covid-19. Collecting appropriate information, statistics and research, in line with the UNCRPD, is the only way to understand whether measures such as shielding are working and plan for the eventual exit from lockdown. The response to the pandemic must be led by accurate science and our country deserves to have transparency at every stage in understanding the impact on our communities and loved ones. One self-advocate with a learning disability described why this was important: “People with learning disabilities are a community. Sharing the numbers of people dying with Learning Disabilities [would tell us] if we are losing friends and people we know all over the country”.
Liberty and security of person, Freedom from torture or cruel, inhuman or degrading treatment or punishment, Freedom from exploitation, violence and abuse, Access to justice (Articles 14, 15, 16 and 13) – The temporary modification of mental health and mental capacity legislation under Section 10 and Schedule 8 of the Coronavirus Act 2020 has caused distress and concern for those with mental ill health in relation to the loosening of the terms of the Mental Health Act 1983. Increasingly people do not feel safe at the prospect of their hospitalisation being determined by a single registered medical practitioner, with the possibility of the period of detention under section on a hospital ward being extended considerably, whilst facing the additional concern about the spread of Covid-19 on psychiatric wards at this time. Whilst the new legislation does not affect people receiving Section 117 after-care services, the Coronavirus Act 2020 does allow NHS providers to delay undertaking the assessment process for NHS continuing healthcare for individuals being discharged from hospital until after the emergency period has ended. Such delay means patients with mental ill health may not have adequate access to appropriate housing, social care, benefit advice and support from mental health teams in the community, leaving them more exposed to acute mental health episodes.
Covid-19 disproportionately affects the lives of those in inadequate, cramped and poor quality housing, who may lack access to outside spaces or direct access to their own front door from the outside world. This is a risk factor for acute mental ill health, especially where it restricts access to exercise, a key factor in improving mental wellbeing. In addition to this, a number of other barriers have emerged preventing persons with disabilities from accessing an adequate standard of living for themselves and their families. The Money and Mental Health Policy Institute has stressed, in particular, the danger of not making alternatives to telephone communication available in accessing support and services for banks and utility companies. This may mean people are struggling with heating and lighting their homes and accessing money. These factors are likely to accelerate poor mental health during lockdown, especially when we know that those in financial need are more likely to suffer from poor mental health. This situation has been worsened by the shift to digital and card transactions, despite a promise having been secured from the Chancellor to maintain a cash economy, acknowledging the disproportionate need for the use of cash among those with mental ill health. Not only have we seen many stores no longer accept cash payments during the crisis, further limiting people’s access to essential supplies, there is a danger that this may have a lasting impact, potentially undermining the recently-acquired guarantee.
Women with disabilities (Article 6) – We support the excellent submission made by the Oxford Human Rights Hub, ‘Gender Equality and COVID-19’ (2020), and draw your attention to their evidence on the disproportionate impact on women in relation to reproductive rights and their role in unpaid care. On the latter point, the care burden often falls to women, many of whom may also have an underlying disability or long-term health condition. However, the carer’s allowance remains one of the few benefits not to be increased during the crisis. This is especially pressing as there is evidence to suggest that one in three of those over eighties provide essential unpaid care for loved ones. Paid care workers with disabilities on zero hour contracts also face a precarious financial situation, they may not be paid under the government’s furlough scheme, and if they are compelled to shield with immediate effect, they will be subject to the mandatory five week wait for Universal Credit. The government must review its package of support to unpaid carers during this time and provide adequate recourse to public funds for those who have to self-isolate due to higher health risks.
Education, Children with disabilities (Articles 24 and 7) - Children and young people with special educational needs and disabilities are being disproportionately affected by Covid-19 in terms of their educational progress, and the negative impact on their behaviour, and emotional and mental wellbeing. Whilst schools have remained open to vulnerable pupils, the ability to access this resource is not the reality for many of these families; especially as their right to all provision from Local Authorities in their Education Health Care Action Plans has been significantly weakened by government. Many will need to shield and be confined to their households, perhaps with only one parent and without any carers coming into the home. Even for those not shielding, difficulties coping with the disrupted routine in getting to school, changes in teaching and support staff, routine and activities at school mean that it is not as simple as suggesting that parents send their children to school. Whilst schools are trying to be in touch with these vulnerable learners, overstretched teachers often cannot prepare sufficiently tailored resources for their home learning. Without significant additional resources and support for families, the significant attainment gap between children and young people with SEND will grow unabated whilst the UK struggles to bring Covid-19 under control. Many activities that parents would use to support their children with SEND outside of school are now unavailable, removing access to behaviour coping mechanisms and outlets to facilitate children’s emotional and mental wellbeing. Routine health care and support may be on hold. Key aspects of the additional support to basic daily living has failed to accommodate the needs of children and young people with SEND.
Work and employment (Article 27) – The considerable barriers people with disabilities already face in obtaining and maintaining employment and reaching their potential are exacerbated as a result of the Covid-19 pandemic. Whilst the enforced move to remote home working during lockdown removes barriers for some disabled people, it will create additional barriers to accessing appropriate assistive technology, office equipment or specialist support for others. Increased reliance on audio and video remote communication, for example, has made working life harder for those with mental ill health, neurodivergent people, those with hearing and sight impairments. The government’s Access to Work programme is crucial for many but currently no additional guidance has been provided about whether support from this scheme will be available if a disabled employee’s work location or work pattern has changed. Some employers may not have the resources to provide their disabled employees with duplicate or additional equipment at home. There is therefore, an increased risk that disabled employees are wrongly regarded as more appropriate candidates for furloughing or redundancy. People with disabilities are also more likely to find redeployment in their existing workplace or securing new employment difficult as companies and organisations are forced to operate differently during the pandemic and when we exit lockdown. These concerns have been recognised by the Business Disability Forum who, have provided specialist advice for employers and employees with disabilities. As restrictions on lockdown are lifted, disabled people are in danger of not being able to return as quickly to the workplace, and, where they have been less able to work during lockdown as a result of their disability, they are likely to miss out on opportunities for promotion, reward and praise.
Urgent Action Needed to Protect the Rights and Freedoms of Disabled People through the Period of Lockdown and Thereafter
We urge you to ask government to undertake an immediate review of legislation passed during the coronavirus crisis and communication thereof. In doing so, we ask that the government take steps to align this legislation, and all its policymaking across ministerial departments, to meet its duties under the Equality Act 2010 and commitments to the United Nations Convention on the Rights of Persons with Disabilities.
Dr Marie Tidball, Coordinator of the Oxford Disability Law and Policy Project, Faculty of Law, University of Oxford
Dr Liora Lazarus, Head of Research at the Bonavero Institute of Human Rights, University of Oxford
Dr Christos Kypraios, Programmes Manager of the Bonavero Institute of Human Rights, University of Oxford
Professor Jonathan Herring, DM Wolfe-Clarendon Fellow in Law, Vice Dean, Faculty of Law, University of Oxford
Mary Bosworth, Professor of Criminology and Director of the Centre for Criminology, University of Oxford
Daniel Holloway, Futures Thinking Network, The Oxford Research Centre for the Humanities
Sarah Stephenson-Hunter, Staff Disability Advisor, University of Oxford
Lucinda Ferguson, Associate Professor of Family Law, Faculty of Law, University of Oxford
Toel Koyithara, BA Jurisprudence, BCL (Oxon)
Charlotte Kelly, MA Law, LLM (NUS), MSt Socio-legal Studies (Oxon)
Sara Scott, Disability Adviser, University of Oxford
Laura Hoyano, University Lecturer, Faculty of Law, University of Oxford, Senior Research Fellow, Wadham College, Oxford, and Barrister, Red Lion Chambers, London
Professor Anna Lawson, BCL (Oxon), Professor of Law and Director of the Centre for Disability Studies and co-ordinator of the Disability Law Hub, University of Leeds
Dr Roxana Willis, Postdoctoral Research Fellow in Law, University of Oxford
Dr Luke Rostill, Associate Professor of Property Law and Tutorial Fellow in Law, Trinity College, University of Oxford
Meghan Campbell, Senior Lecturer, University of Birmingham
Gayathree Devi Kalliyat Thazhathuveetil, BCL (Oxon)
Sameer Rashid Bhat, MPP (Oxon)
Rahul Bajaj, BCL (Oxon)
Dr Rachel Wechsler, MSc, DPhil (Oxon), Acting Assistant Professor and Associate Director of the Lawyering Program, NYU School of Law
Damian Haywood, Operational Lead, Nuffield Department of Surgical Sciences, University of Oxford
Dr Elizabeth Frood, Director of the Griffith Institute, Centre for Eqyptology, University of Oxford
Dr Jenny Gladstone, Research Development Manager, Research Services, and Diversity in Research Funding Project Lead, University of Oxford
Ms Hannah Ravenswood, Organisational Development Adviser, People and Organisational Development, University of Oxford
Elizabeth Crowley, Departmental Librarian, Oxford University Department of Earth Sciences
Farhana Hamid-Butt, BCL, MPhil (Oxon)
Dr Insa Koch, DPhil (Oxon), Associate Professor of Law and Anthropology, The London School of Economics and Political Science
Dr Kate West, MSc, DPhil (Oxon), Senior Lecturer in Visual Criminology, Oxford Brookes University
Teresa Smith, University Lecturer in Social Policy and Social Work (retired), Former Head of Department of Social Policy and Social Work, University of Oxford
Dr Emily Barritt, BA Jurisprudence
Dr Kylie Murray, MSt, DPhil (Oxon), and Fellow Emerita Oxon.
Abby Buttle, BCL (Oxon),
Dr Kathryn Barush, Mst, DPhil (Oxon), Thomas E. Bertelsen Jr. Chair & Associate Professor of Art History and Religion, University of Californa, Berkely
Cllr Mike Rowley, BA Jurisprudence (Oxon)
Professor R. B. Parkinson, Professor of Egyptology, University of Oxford
Marco Di Nunzio (DPhil Oxon), Lecturer in Anthropology of Africa, University of Birmingham
Dr Charlotte Bruckermann, MSc and DPhil (Oxon), Fellow of the Department of Social Anthropology, University of Bergen, Norway
April 2020
[1] Paul Scarrott, Self-Advocate, My Life My Choice, in his contribution to this response.