Unequal impact? Coronavirus, disability and access to services

We were unable properly to scrutinise the effects of Care Act easements on disabled people because there are no published data, for example on the number and categories of people, or the types of social care services, affected. The Government must demonstrate that it is keeping local authorities’ use of Care Act easements under thorough review and allow for proper scrutiny of data on the effects on disabled people. We welcome the Government’s commitment to publishing Think Local Act Personal’s report on the effects as part of the six-monthly review process. We urge the Government to ensure the report and all the accompanying data are published before the forthcoming six-monthly review and vote in the House, and each subsequent six- monthly review debate and vote, on temporary Coronavirus Act provisions, so that they can be used to inform the debates.

Care Act easements are available as a last resort for local authorities, to help them prioritise care and support for people with higher levels of need, should resources become overstretched to a dangerous degree, potentially threatening life. We were concerned about evidence from the Local Government Association that some local authorities had taken a pre-emptive approach, triggering an easement in case it became necessary. We were disappointed to hear that Ministers were unaware that this approach had been taken. The Minister for Disabled People was clear that it was against the Government’s guidance.

We acknowledge that steps have been taken towards greater transparency in the Care Act easement process, notably the publication of an updated list of local authorities using the easements; however, we believe this falls short of a proportionate level of transparency and accountability. The current process is not stringent enough to provide confidence that easements cannot be triggered for anything other than severe demand or resource issues caused by the pandemic. As such, it is impossible to scrutinise whether easements are being mis-used. We recommend guidance to local authorities on use of Care Act easements be updated to state that local authorities should keep a record of the reasons for their decisions and the anticipated effects on people and services, as set out in the current guidance but omitting the phrase “where possible”. Local authorities should in all circumstances keep such a record. We recommend the guidance be updated to state that local authorities should publish the information contained in the record prior to notification to the Department for Health and Social Care. We further recommend the guidance be updated to state explicitly that pre-emptive triggering of easements prior to publication of the decision record would be a misuse of the provisions, leaving local authorities open to legal challenge.

The coronavirus pandemic has highlighted and exacerbated pre-existing systemic problems in the social care system, including urgent need for: a more sustainable funding solution; resolution of workforce issues, including low pay, poor progression and high staff turnover; and much closer integration with health services. The pandemic has demonstrated the need to place a much greater value on social care 24 Unequal impact? Coronavirus, disability and access to services: interim Report on temporary provisions in the Coronavirus Act and its workforce. None of these issues are new, but they have been brought into sharp focus by the pandemic and require urgent attention. We intend to return to these issues in our main Report.

There is broad agreement that the Coronavirus Act’s Care Act easement provisions should be curtailed as soon as possible. They represent a substantial raising of the threshold at which disabled people’s care and support needs must be met. This regression of disabled people’s rights must not be allowed to become the norm.

Had the pandemic been more clearly under control, we would have recommended repeal of the Care Act easements at the first six-monthly review. However, the current precarious state of the pandemic, combined with the fragility of the social care system, makes repeal a finely balanced judgement call. Throughout the peak of the pandemic earlier this year, only around five per cent of English local authorities triggered easements to their Care Act duties, and none have been relying on them since early July. There is, however, considerable uncertainty about how the virus might progress through the autumn and winter and what the effects might be on local authorities’ capacity to cope with social care demand.

On balance, and subject to our other recommendations to tighten guidance and increase transparency being implemented, we accept that the Care Act easement provisions may need to remain in place over the winter period. The Government should keep the need for the Care Act easement provisions under constant review over the autumn and winter. It should use its power to suspend them immediately should it become clear that a second peak of the virus has been avoided. Should the progress of the pandemic remain stable or improve, we recommend the provisions be repealed before or at the second six-monthly review in Spring 2021. We recommend the Government state publicly that it intends to take this approach. This would provide greater clarity, and some reassurance, to disabled people and be an important marker of the Government’s determination to fully restore disabled people’s absolute rights to the care and support they need. (Paragraph 35) Mental Health Act

The Coronavirus Act’s emergency changes to the Mental Health Act 1983 were intended for use as a last resort should mental health staff resources be depleted by the pandemic to the extent that people needing assessment or detention in hospital become a risk to themselves or others. These provisions have not come into force in England because, through the peak of the pandemic earlier this year and to date, existing processes have proved sufficiently robust and adaptable to make them unnecessary. In these circumstances, Ministers have the power to suspend the measures and, if absolutely necessary, reinstate them at a later date. While we acknowledge that the current precarious stage of the pandemic means that the future is uncertain, evidence suggests the measures are unlikely to be needed. Furthermore, relaxing requirements for authorising people’s detention in hospital and extending or suspending time limits for detention goes directly against the grain of much- needed Mental Health Act reform. This is intended to address inequalities in the existing system, as set out in the final report of the Independent Review of the Mental Unequal impact? Coronavirus, disability and access to services: interim Report on temporary provisions in the Coronavirus Act 25 Health Act 1983 in December 2018. This adds impetus to the call for the emergency powers to be curtailed as soon as possible. They should not be left available “just in case”. We recommend the Government should, as a minimum, if not repeal the provisions, use its power to suspend the Mental Health Act provisions in England by Regulations and only reinstate them should mental health service providers call for their reintroduction. This would send an important signal of the Government’s support for a more just and equitable system, while leaving open the possibility of reinstating emergency measures should they be needed. Should the progress of the pandemic remain stable or improve, we recommend repeal of the measures

Assessing needs and securing provision for children and young people meeting the threshold for EHC Plans was an extreme challenge for local authorities during the peak of the pandemic earlier this year. Local authorities could not have been expected to meet their EHC Plan duties fully in these circumstances; some flexibility was needed. It is less clear whether it was necessary for the relaxed “reasonable endeavours” duty to remain in place until the end of July, leaving many children and young people with special educational needs and disabilities with very little or no support for three months. We recommend the Department review the information- gathering and decision-making processes in place with a view to making a faster decision to return to full EHC Plan duties, should flexibilities be introduced again.

The “reasonable endeavours” duty in relation to Education, Health and Care (EHC) Plans is a nebulous concept, which has been inconsistently interpreted and poorly understood by some local authorities, whose support for children and young people with special educational needs and disabilities fell far short of an acceptable standard after the issuing of national section 42 notices from May to July. There were extreme examples of local authorities failing to communicate at all with children and young people and their families. This is clearly unacceptable. We understand and support the intention to provide local authorities with flexibility to adapt to local circumstances during the pandemic, but they must not be allowed to interpret a relaxed duty as leeway to do nothing to support children and young people’s needs.

If the Secretary of State for Education’s power to invoke the “reasonable endeavours” duty in relation to EHC Plans is to remain in place, we recommend the Department for Education update its guidance to local authorities to include the factors which must be considered in deciding how the relaxed duty can best be fulfilled. The guidance should include a set of minimum standards and a range of examples of good practice in supporting children and young people with special educational needs and disabilities (SEND) when resources are stretched by the pandemic. We further recommend that, should flexibilities in EHC Plan duties become necessary again, notices be issued on a local basis only, in direct response to local effects of the pandemic, instead of the blanket, national approach taken earlier this year. We further recommend that 26 Unequal impact? Coronavirus, disability and access to services: interim Report on temporary provisions in the Coronavirus Act guidance to local authorities operating EHC assessments and Plans under reasonable endeavours be updated to state that they should publish information about what this will mean in practice for children and young people with SEND and the minimum level of provision they expect to be able to provide. We believe the time is right for this change of approach. It would be in line with the more local approach to coronavirus-related restrictions since the end of national lockdown and would offer some reassurance to children and young people with SEND and their families that any changes to support will only occur when strictly necessary as a result of the pandemic.

At the time of writing, the Special Educational Needs and Disability (Coronavirus) (Amendment) Regulations 2020, which temporarily modify the time limits in relation to EHC assessment and Plans, were due to expire on 25 September. This will add further pressure to local authorities already facing the huge challenge of dealing with an inevitable backlog of cases. The Department must set out a clear national strategy for managing the backlog of EHC assessments and Plans, to ensure children and young people with special educational needs and disabilities get the support they need, within the statutory timescales. It should also set out in guidance to local authorities clear criteria for prioritising EHC cases. (Paragraph 60) Parliamentary review

We consider the section 98 arrangements for six-monthly parliamentary review of temporary Coronavirus Act provisions unsatisfactory. The Act prescribes a binary “take all or leave all” vote, which will present MPs with no real choice over provisions which have clear and obvious equality impacts on their disabled constituents and which, they may take the view, are no longer justified, either this autumn or later in the two-year lifetime of the Act. Continuing these provisions has the potential to further restrict or curtail important and hard-won rights relied upon by disabled people and deserves proper consideration, separately from the statutory vote. Arranging for the House to express its view on temporary provisions with clear and obvious implications for disabled people would be an opportunity for the Government to demonstrate its commitment to equality. The Government should not only to give MPs the chance to debate the temporary provisions discussed in this Report but should also make arrangements to test, separately from the statutory vote required by section 98 of the Coronavirus Act, the view of the whole House on the merits of continuing different, individual provisions for a further six months and each subsequent six-month period until the sunset provision of the Act. Arrangements should be made for this to happen before the second six-monthly review in spring

We welcome the Government’s decision to discontinue the Coronavirus Act’s Mental Health Act provisions, which potentially relaxed requirements for sectioning, against the grain of overdue and much-needed reforms, and which thankfully proved to be unnecessary in England. We will continue to push for progress towards implementation of our recommendations on Care Act and Children and Families Act provisions and guidance. (Paragraph 4) Access to food

The Government’s focus on people defined as “clinically extremely vulnerable” (CEV) to the virus, while rational from a medical perspective, was an inappropriate proxy for the need for support with access to food and had unintended consequences. It was rapidly established and broadly effective for those on the CEV list, for which everyone involved should be congratulated, but it also set one group of people with clinical needs against others with social barriers to food shopping during the pandemic. The Government’s predominant focus on supporting CEV people, and its clear direction to the food sector to prioritise them, may have contributed to some supermarkets overlooking their legal obligations to make reasonable adjustments for the broader population of disabled people, which has led to legal challenges.

We welcome the steps the Equality and Human Rights Commission (EHRC) has taken to emphasise that food retailers’ legal obligations to make reasonable adjustments for disabled people have remained in place throughout the pandemic. We fully endorse its new guidance to food retailers on the steps required to continue to meet their obligations, including in emergency situations. The Government should also publicly state the vital importance of reasonable adjustments to allow disabled people equal access to food during the pandemic. The Government should also publicly state the vital importance of reasonable adjustments to allow disabled people equal access to food during the pandemic. We recommend the Government better promote the EHRC’s new guidance to food retailers, including in its ongoing discussions with the food retail sector on maintaining disabled people’s access to food during the remainder of the pandemic.

We further recommend the Government consider, with disabled people, as part of its consultation on the proposed National Strategy for Disabled People, the steps needed to more effectively adopt a social model of disability in relation to maintaining disabled people’s access to food for the remainder of this pandemic and in future crises. This consultation should consider the actions required to eliminate barriers to physical and online food shopping. The Government should consider with disabled people how, in crisis situations, to identify and reach a single category of people, including disabled people who may not have clinical needs and people with medical conditions who may not be disabled, who need food deliveries. It should consider not only the steps required by retailers to meet obligations under the Equality Act but also steps required 42 Unequal impact? Coronavirus, disability and access to services: full Report by the Government to meet its obligation under the UN Convention on the Rights of Persons with Disabilities to respond to emergency situations in a way which includes consideration of the needs of disabled people.

Ministers paused the national shielding programme in August and in September asserted that “we need to get away from the food parcel model”, without offering any evidence of the Government’s assessment of the level of disabled people’s needs for help accessing food, including free food deliveries. Since then, there have been local lockdowns and a return to national measures, with clinically extremely vulnerable people once again advised by the Government to avoid leaving their homes, including to shop for food. People must now rely on friends, family, carers, volunteers and local authorities, which have been provided with additional funding but whose resources are over-stretched. In circumstances in which the Government is asking people to shield, we believe it has a duty to ensure that the local support arrangements that have replaced the national shielding programme, and the funding in place to support them, are adequate to meet the level of need. The Government must immediately publish its assessment of disabled people’s needs for support accessing food, including provision of free food box deliveries. It must also publish a plan to review the adequacy of local arrangements and central government funding to support disabled people who need help getting food while coronavirus restrictions remain in place. We expect such a plan to be published within two months of publication of this Report, and be both updated and re-published regularly during the remainder of the pandemic. (Paragraph 36) Health and social care

We will continue to push for greater accountability and transparency while Care Act easements remain available to local authorities and for their swift repeal should the pandemic become more clearly under control before or at the next six-monthly parliamentary review, due in spring 2021.

Early in the pandemic, the National Institute for Health and Care Excellence’s (NICE) critical care guidelines and doctors’ inappropriate or blanket use of “Do not attempt resuscitation” (DNAR) notices were potentially discriminatory. While we welcome actions taken swiftly to address disabled people’s concerns, and steps subsequently taken by NICE and the NHS to review their practices and try to put things right, the fact that potentially discriminatory practices emerged in the first place is deeply concerning. These issues caused disabled people great distress and anxiety and left them feeling their lives were less valued than others’. A robust response is required to restore disabled people’s confidence that their needs are given equal consideration across government and public services, should we be faced with a similar public health emergency in the future.

The Equality Act 2010’s Public Sector Equality Duty is intended to ensure public authorities have due regard, including in their decision making, policies and service delivery, to achieving the Act’s objectives, which include the elimination of discrimination against groups of people who share a protected characteristic. The Equality and Human Rights Commission has published non-statutory technical guidance on the Duty. This provides public authorities with a detailed Unequal impact? Coronavirus, disability and access to services: full Report 43 and comprehensive guide to the law, but, while it can be admissible as evidence in the courts, it does not have its own legal authority. We believe disabled people’s experiences of public services during the pandemic make the case for a strengthening of the Public Sector Equality Duty, outweighing any concerns about additional burdens on authorities. The Government should consent to the Equality and Human Rights Commission issuing a statutory Code of Practice on the Public Sector Equality Duty.

Prior to the pandemic, people with learning disabilities experienced health inequalities and faced difficulties accessing healthcare and receiving accurate diagnoses and effective treatments. They had increased risks of dying from a range of illnesses, including respiratory infections. These problems have been exacerbated by coronavirus, to which, emerging data suggest, people with learning disabilities may be disproportionately susceptible. It is therefore vital that annual health checks for people with learning disabilities, designed to identify previously unrecognised health needs, are fully reinstated across the NHS as soon as possible. We welcome the British Medical Association’s (BMA) and NHS England’s recognition of the importance of improving care for people with learning disabilities, and their agreement that restoration of services is a quality improvement requirement for GP practices for the remainder of this financial year. We recommend the Department of Health and Social Care work with the BMA, NHS and organisations representing people with learning disabilities, including user-led groups, to set stretching but achievable longer-term targets for the full reintroduction of annual health checks across the NHS and for the percentage of disabled people who attend them.

The widespread adoption of continuous facemask wearing in health and social care settings has made effective communication impossible for patients and healthcare professionals who lip-read, and much more difficult for Deaf people who use British Sign Language and people with disabilities which mean they are more reliant on facial expressions for communication. We therefore strongly welcome the development of medically approved transparent facemasks and the Government’s procurement of 250,000 pieces for distribution in the NHS and to social care providers. This is a good first step towards fully meeting the Equality Act’s Public Sector Equality Duty and reasonable adjustment obligations to disabled people, by ensuring that clear facemasks are readily accessible across the whole health and social care system, based on need. We are not, however, aware of any analysis of the adequacy of 250,000 masks to meet current or ongoing needs. We ask that the Department of Health and Social Care update us, in its response to this Report, on: progress in distributing clear face masks to NHS Trusts; the effectiveness of the pilot system to distribute the masks to social care providers through Local Resilience Forums; its assessment of the level of need for clear facemasks across health and social care services; and its plans for further procurement and distribution.

We were disappointed with the 2020 Spending Review’s financial settlement of £300 million in additional grant funding for local authorities’ social care in 2021/22. We believe it falls considerably short of what is required. We agree with the Health and Social Care Committee that an increase in funding for social care, worth around £4 billion per year by 2023/24, will be a necessary first step towards fixing systemic problems in the sector. (Paragraph 84) 44 Unequal impact? Coronavirus, disability and access to services: full Report

The Government must bring forward a social care reform package, which includes the whole sector, in this financial year. There has been a tendency by successive governments to focus on the problem of rising costs of caring for elderly people, particularly in care homes, and the unfairness of being forced to sell family homes to pay for care in later life. While these are key problems for which solutions must be found, the Government’s reform package must be more wide-ranging, and include actions to improve the quality and personalisation of care and support for working age disabled people across all social care settings. It must address workforce issues across the sector, including low pay, poor career progression and high turnover. Its reforms must include a plan to more effectively integrate services and achieve parity of esteem across health and social care as a single system. The vital importance of the whole social care sector and its workforce has never been so apparent; it must now be valued accordingly. (Paragraph 85) Provision for children and young people with special educational needs and disabilities (SEND)

Our interim Report made several recommendations about how the Secretary of State should use his powers in relation to duties towards children and young people’s educational, health and care needs, if they are required again during the pandemic. We also made recommendations about the Government’s guidance to local authorities on how to interpret and apply reasonable endeavours. We will continue to push for implementation of our recommendations while the temporary powers remain available.

Delivering effective support for children and young people with SEND during a public health crisis was inevitably a massive challenge, to which some local authorities were unable to rise. The pandemic demonstrated and exacerbated a widely acknowledged pre-existing crisis in SEND provision. As set out in our interim Report, many children and young people received little or no support for three months. The Government must now prioritise its SEND review, launched over a year ago, and bring forward as a matter of urgency reforms which address fundamental problems of funding, consistency of support, accountability and integration of services, identified by the Education Committee and the National Audit Office in 2019. The outcome of the SEND review must be published no later than the first quarter of 2021 and set out the Government’s plan to reach a sustainable funding model while achieving the core aims of the 2014 reforms.

We welcome the Government’s educational catch up fund made up of £650 million to be allocated across all schools and £350 million for pupils in more disadvantaged schools to access subsidised small group tutoring and mentoring.

We agree that catch up funding should be weighted towards children who have been “hardest hit” by disruption to their education. We know that many children with special educational needs and disabilities (SEND) will be in the hardest hit group; many received little or no support earlier this year. We know that pupils with SEND are likely to fall further behind without commensurate help. Pupils with SEND in mainstream schools have often borne the brunt of the dysfunctional SEND system, missing out on support for their needs through a lack of ring-fenced funding. We Unequal impact? Coronavirus, disability and access to services: full Report 45 are very concerned that catch up funding allocations do not adequately reflect this. In the light of experiences earlier this year, it is unacceptable that the £1 billion catch up premium does not include ring-fenced funding for pupils with SEND in mainstream schools. We recommend that funding for the remaining tranches of the universal catch up allocation be increased by around £211 million, to allow mainstream schools to receive £240 per pupil with an EHC plan or receiving SEN Support, ring-fenced for their catch-up support in this academic year. We further recommend the Department procure an additional strand of specialist provision in the National Tutoring Programme, designed to support pupils with EHC plans and those receiving SEN Support, across all schools. (Paragraph 105) Engagement and communications with disabled people

There was a clear divergence of opinion between some disabled people and their organisations, who felt excluded and ignored by the Government, and Ministers, who described their engagement with disabled stakeholders during the pandemic as very positive, open and effective. Addressing perceived weaknesses in the Government’s consultation and engagement with disabled people must form a key strand of the proposed National Strategy for Disabled People. The Government must consult widely with disabled people and their organisations on ways to embed in the Strategy genuinely effective mechanisms by which disabled people can influence policies and practices which directly affect them.

The way the Government has communicated with disabled people has, on occasions, caused confusion and compounded already keenly felt anxiety. The chosen method and timing of communications with people categorised as clinically extremely vulnerable, and therefore likely to be living under very considerable stress, has sometimes been poorly thought out, with insufficient consideration given to the psychological effects on recipients and their families. We recommend Ministers and officials involved in communicating public health messages to disabled people should undergo training in psychologically informed communications which take fully into account and empathise with disabled people’s lived experience.

The accessibility of the Government’s communications to disabled people during the pandemic has been poor from the outset of lockdown in March. The Government has been far too slow to address concerns, notably about the lack of British Sign Language interpretation of government television briefings. Accessibility should have been baked in from the start. Much of what is being asked for could be simply achieved, often at low cost, and bring considerate benefit to disabled people. We recommend the Cabinet Office implement in full the list of accessible communications asks from RNID and other charities. We expect real progress to have been made towards this by the time the government responds to this Report and urge full implementation no later than the end of the first quarter of 2021.

NHS health and publicly funded social care services are legally required, by the Accessible Information Standard, published under section 250 of the Health and Social Care Act 2012, to provide health and care information to patients and service users in a way they can understand. The aim is to ensure a consistent approach to identifying and meeting the information and communication needs of patients and 46 Unequal impact? Coronavirus, disability and access to services: full Report service users, their carers and families. Disabled people’s experiences of inaccessible public health information from the Government during this pandemic have been unacceptable. Disabled people have been put at risk through lack of access to vital information. Their communication needs should have been anticipated as a matter of course. Everyone should have the right to receive public health information in a format they can understand. We recommend the Accessible Information Standard be extended to apply to all public health messages from government departments.

We agree with organisations representing Deaf British Sign Language users that we should set a good example in the accessibility of our public oral evidence sessions. It is regrettable that we did not provide live BSL interpretation and subtitles via www.parliamentlive.tv, particularly as we were scrutinising the accessibility of the Government’s communications during the pandemic. It is reasonable and proportionate for BSL users to request that interpretation and subtitles are provided in these circumstances. There are technical difficulties, which are beyond this Committee’s control, to overcome before this can be achieved. We recommend the Liaison Committee of the House of Commons review the adequacy of funding, technical capabilities and expertise available to support live BSL interpretation and subtitles of select committee proceedings on www.parliamentlive.tv. We further recommend that the House of Commons Commission make it an objective to ensure that a greater proportion of the coverage of the House is fully accessible to Deaf people via the provision of live BSL interpretation and subtitles of debates. (Paragraph 127) A future independent inquiry

In the light of starkly disproportionate and tragic data on death rates from coronavirus of disabled people, including shocking figures for deaths of people, including young people, with learning disabilities, there must be a discrete independent inquiry into the causes. It must be a wide-ranging inquiry, including consideration of the role of the Government’s and public authorities’ policies and decisions in adverse outcomes for disabled people. The independent inquiry must be established as soon as we have gained control of the pandemic, which we all hope will be in the first half of 2021. (Paragraph 134) Unequal impact? Coronavirus, disability and access to services: full Report 47