Written evidence from the Equality and Human Rights Commission (COV0159)
Adult social care and the right to independent living
1. The Equality and Human Rights Commission has been given powers by Parliament to advise Government on the equality and human rights implications of laws and proposed laws, and to publish information or provide advice, including to Parliament, on any matter related to equality, diversity and human rights.
2. The coronavirus pandemic is putting unprecedented pressure on the social care system. In these challenging circumstances, it is nonetheless essential that social care provision is compliant with equality and human rights laws. The UK Government’s obligations to protect the right to life, the prohibition on inhuman and degrading treatment, the right to liberty and security, and respect for private and family life, without discrimination, are crucial in this context.
3. The UK Government also has a UN treaty obligation to protect, respect and fulfil the right to independent living. This is a fulcrum right about ensuring that disabled people are able to exercise freedom of choice and control over decisions affecting their lives on an equal basis with others.
4. The right to independent living is about ensuring that disabled people are able to enjoy the same self-determination and independence within society as everybody else. It provides that practical steps are required to realise human rights for disabled people, including many of the rights enshrined in the European Convention on Human Rights (ECHR).
5. The pandemic has created significant threats to the right to independent living and right to liberty and security for disabled and older people, including reductions in personal, residential and other community support services; reductions in detention safeguards; and barriers preventing equal access to community services and facilities.
6. Prior to the outbreak of COVID-19, adult social care was already under severe pressures across the UK, due to an ageing population, rising demand and substantial reductions in government funding to local authorities since 2010-11. As a result, only those with severe needs were receiving support.
7. Pressures on the system have worsened because of the impact of the pandemic with increased demand for services and reductions in workforce capacity. The provisions of the Coronavirus Act 2020 allow scope for services to deteriorate by permitting local authorities in England to suspend their duties under the Care Act 2014 (referred to hereafter as ‘Care Act easements’). While our concerns that these easements would be widely triggered have to date not materialised, we are concerned by reports that local social care provision has nonetheless significantly reduced, with wide-ranging implications for human rights.
8. Under the Coronavirus Act 2020 (‘Coronavirus Act’) and associated guidance, local authorities must report any decision to operate under the Care Act easements to the Department of Health and Social Care (DHSC), together with the reasons for doing so. This information is shared with the Care Quality Commission (CQC) and others and is published for transparency. Local authorities must communicate the decision in an accessible way to a range of interested parties including service users and local MPs.
9. The Coronavirus Act guidance, however, makes clear that local authorities can change provision or ‘apply flexibilities’ under the pre-amendment Care Act without triggering the easements or notifying the DHSC, where COVID-19-related absences mean that service types need to be changed, delayed or cancelled in the short-term.
10. A number of disabled people’s organisations (DPOs) have reported that there have been significant reductions in care provision for disabled people, including in areas where local authorities have not triggered the Care Act easements. DPOs have also reported a lack of information and transparency regarding decisions taken by local authorities to reduce or change care provision. We are concerned that there is not a clear picture of how social care provision has been affected during the pandemic and that there is a lack of central oversight.
11. A reduction in care provision could place disabled adults, those with long-term health conditions and older people with care needs at risk of having their essential needs neglected, such as access to food and water, medicines, clothing, hygiene and exercise, with both immediate and long-term implications for well-being. These risks relate particularly to the right to life, respect for private and family life, and the right to freedom from inhuman and degrading treatment.
12. The Coronavirus Act makes clear that the provision of social care should remain compliant with the ECHR, including where Care Act easements have been triggered. However, we are concerned that this safeguard is insufficient and will leave many disabled adults and older people with no entitlement to care at a time when their needs may be considerable. The provision assumes that local authority staff have sufficiently sophisticated knowledge of the law to make a determination about whether care and support is required to avoid a breach of an individual’s Convention rights. Even if a correct determination is made, the threshold for a breach of the ECHR is particularly high in relation to social care and many people with significant needs would fall through the net.
13. We have consistently recommended that the Government must ensure any restrictions on people’s rights in response to the pandemic must be necessary, proportionate, time-bound and are properly scrutinised. In light of the limited use to date of the Care Act easements and the weak safeguards associated with them, together with the widespread use of pre-amendment Care Act flexibilities, we recommend:
14. We further encourage local authorities to carry out and publish equality impact assessments to demonstrate that they have considered and minimised any negative impact for people sharing protected characteristics when changing social care provision under the pre-amendment Care Act.
15. Furthermore, we are worried about the long-term implications of the pandemic on the provision of social care. A survey by the Association of Directors of Adult Social Services found that the pandemic has driven increased demand and mounting unmet need due to concerns among some providers about accepting referrals, service closures and people declining services. Local authorities and care providers may face significant additional costs due to the pandemic and the UK Healthcare Association has warned of the risk to millions of people receiving support and care in their own homes if state-funded care providers become insolvent. Government should consider all possible means to ensure that local authorities and care providers are able to meet increased care and support needs during and resulting from the pandemic.
16. We are further concerned that reductions in residential and community health and social care provision could lead to increased and prolonged rates of detention. A number of charities have raised concerns that reduced community provision, health and safety challenges, and delayed testing are leading to delayed discharges, and increased admissions to residential care for older and disabled people. Similarly, we are concerned that a lack of appropriate community health and social care provision could lead to an escalation in people’s needs, resulting in unnecessary detentions.
17. The Coronavirus Act contains provisions to relax crucial safeguards for those detained under the Mental Health Act (‘MHA’). While these provisions have not been triggered there is guidance in place that allows departures from the MHA code of practice, and changes to the mental health tribunal are already in force, which could reduce people’s ability to challenge detention and treatment. We are also concerned about the lack of available data on detention rates under the MHA. We recommend:
18. A rise in detention rates would also have implications for the right to life. There is evidence that social distancing and other public health measures are more difficult to implement effectively in places of detention; and, during the pandemic, there has been an increase in the number of deaths among people detained in mental health, learning disability and autism services. A further concern for us is the potential increase in restraint and seclusion as a result of measures to reduce the risk of infection. This is compounded by a lack of oversight while reduced inspections are in place. Given the implications for the right to life and liberty, Government should commit to sustained resourcing of mental health and social care services during and after the pandemic, including provision of sufficient community-based support to prevent crisis and unnecessary detentions. Any measures that restrict rights must be lawful, necessary, proportionate, temporary, non-discriminatory, and meet a core minimum level of protection for rights. The Government should also ensure collection and publication of data on COVID-19 cases and deaths of those detained under the MHA, to date and moving forward, disaggregated by all protected characteristics, types of impairments, institutional settings, and cause of death.
19. The pandemic has created specific barriers for some disabled and older people in accessing public services. These include barriers preventing equal access to food, medicines and essential supplies, public transport, the labour market, education, and access to justice. Concerns raised by DPOs about a failure by Government to engage with disabled people in planning the response to the pandemic, and a failure to ensure accessible communication, together with the increased digitisation of public services and use of language centred around the medical model of disability and vulnerability during the pandemic could all have negative long-term implications for disabled people’s social and economic participation in society. The Government should work with disabled people and their representative organisations, in line with the recommendations of the UN Committee on the Rights of Persons with Disabilities, to ensure that recovery planning is inclusive, compliant with equality and human rights obligations, and informed by the insights and experiences of disabled people.
20. The right to independent living is not currently incorporated into domestic law in the UK. There has been evidence of a regression on this right in recent years in England, and this has been exacerbated by the pandemic. We have developed a proposed legal model for the domestic incorporation of the right to independent living, which was previously endorsed by the Committee. We are concerned that the pandemic could lead to a long-term regression in standards and protections for disabled people caused by a combination of funding cuts and longer-term behavioural change. The incorporation of a right to independent living could help to prevent this, by providing greater legislative protection of the human rights of disabled and older people. The Government should incorporate the right to independent living in domestic law to protect the human rights of disabled and older people during and in the aftermath of the pandemic.
 The Equality and Human Rights Commission (‘EHRC’) encourages compliance with the Human Rights Act 1998 and is accredited at UN Level as an ‘A status’ National Human Rights Institution, in recognition of its independence, powers and performance. Our remit on human rights issues covers England and Wales; and we have a shared remit with the Scottish Human Rights Commission on human rights issues in Scotland. All hyperlinks in this submission have been accessed on 2 July 2020 unless otherwise stated in the footnotes.
 This submission focusses on adult social care. We raised concerns about the impact of the pandemic on children’s social care in our recent submission to the Education Select Committee as part of the Committee’s inquiry into the impact of COVID-19 on children’s services and education.
 Article 2 of the European Convention on Human Rights (‘ECHR’), which is enacted into UK law through the Human Rights Act (1998).
 Article 3 ECHR.
 Article 5 ECHR.
 Article 8 ECHR.
 Articles 2, 3, 5 and 8 ECHR in conjunction with Article 14 ECHR.
 Article 19 of UN CRPD.
 UN Committee on the Rights of Persons with Disabilities, General Comment No. 5: Right to independent living (adopted 31 August 2017).
 As enshrined in Article 19 of UN CRPD.
 UN Committee on the Rights of Persons with Disabilities, General Comment No. 5: Right to independent living (adopted 31 August 2017).
 See paragraphs 6-15.
 See paragraphs 16-18.
 See paragraph 19.
 CQC (14 Oct 2019), ‘The state of health care and adult social care in England 2018/19’; The Health Foundation (29 May 2019), ‘£4.4bn funding gap projected for social care in England as spending per person falls further behind other UK countries’. The King’s Fund (April 2019), ‘More people asking for social care support but fewer getting it as demand leaves social care system at crisis point’.
 The King’s Fund (April 2019), More people asking for social care support but fewer getting it as demand leaves social care system at crisis point. Association of Directors of Adult Social Services (July 2019), ‘ADASS budget survey 2019’.
 Association of Directors of Adult Social Services (11 June 2020), ‘Budget Survey 2020’.
 Coronavirus Act 2020 replaces the previous duty on local authorities in England to assess and meet a person’s needs for care and support (as provided for by the Care Act 2014) with a power to do so, thereby downgrading the level of care to which an individual is entitled. The Coronavirus Act also allows local authorities to suspend their duties to review care plans and carry out financial assessments. See Coronavirus Act 2020, Clause 15 and Schedule 12, and Coronavirus Bill Explanatory Notes, paras 232-237.
 The Government’s two-month-on report on the use of powers under the Coronavirus Act reported that seven local authorities had triggered the Care Act easements. DHSC (29 May 2020), ‘Two-monthly report on the non-devolved provisions of the Coronavirus Act: May 2020’. As of 9 July 2020, the CQC reported that there were no local authorities in England operating under the easements. CQC, ‘The Care Act and the ‘easements’ to it’ (last updated 9 July 2020).
 A survey by the Research Institute for Disabled Consumers (RIDC) found that 54.6 per cent of people with care support needs are no longer receiving health or personal care visits to their home: RIDC (8 June 2020), ‘Covid-19: our third survey into the impact on disabled and older people’ (due to a small sample size, the results of the RIDC Survey should be viewed as an indication of a possible trends only); Lisney, E. et al. (April 2020), ‘The Impact of COVID 19 on Disabled Women from Sisters of Frida: Voices of Disabled women in the pandemic’, Sisters of Frida; Inclusion London (June 2020), ‘Abandoned, forgotten and ignored: the impact of the coronavirus on disabled people: interim report’.
 DHSC (20 May 2020), Care Act Easements: Guidance for local authorities.
 Ibid. Appendix A sets out that local authorities can prioritise short term allocation of care and support using current flexibilities within the Care Act ‘where COVID-19 related absence means service types need to be changed, delayed or cancelled’.
 The UN Committee on the Rights of Persons with Disabilities sets out that organisations of disabled people should be rooted, committed to and fully respect the principles and rights recognised in the UN CRPD. They can only be those that are led, directed and governed by disabled people; and a clear majority of their membership should be recruited among disabled people. See UN Committee on the Rights of Persons with Disabilities, General Comment No. 7 ‘Article 4.3 and 33.3: Participation with persons with disabilities in the implementation and monitoring of the Convention’ (Adopted 21 September 2018).
 See for example, concerns summarised by Fazilet Hadi (Policy Manager, Disability Rights UK) in oral evidence to Women and Equalities Committee, ‘Unequal impact? Coronavirus, disability and access to services’ (24 June 2020).
 There is no requirement on local authorities to inform the DHSC or the CQC if they change or reduce provision by applying flexibilities under the pre-amendment Care Act. Moreover, there is no requirement on local authorities to publish data on any changes to the number of care recipients or care hours funded or provided by the local authority during the pandemic.
 Samuel, M. (22 March 2020), ‘Coronavirus legislation becomes law, allowing ministers to suspend key Care Act duties’, Community Care; CASCAIDr (20 March 2020), ‘The Coronavirus Act and its impact on the Care Act’; Inclusion London (June 2020), ‘Abandoned, forgotten and ignored: the impact of the coronavirus on disabled people: interim report’.
 Article 2 ECHR.
 Article 8 ECHR.
 Article 3 ECHR. Both the right to life (Article 2 ECHR) and freedom from torture (Article 3 ECHR) are non-derogable and cannot be suspended even in a state of emergency.
 In England, amendments to the previous duty on local authorities to assess and meet a person’s needs for care and support are underpinned by an explicit continued duty to meet needs where failure to do so would result in a breach of the ECHR. See Coronavirus Act 2020, Schedule 12, para 4.
 The British Institute of Human Rights (BIHR) has raised concerns about the capability of local authority staff to understand and apply minimum human rights obligations in relation to social care. See BIHR (24 March 2020), ‘Human Rights Implications of the Coronavirus Bill: The risk of making vulnerable adults and children even more vulnerable’.
 Richards, J. et al. (20 March 2020), ‘The Coronavirus Bill – Schedule 11’, 39 Essex Chambers.
 UN CRPD Articles 3, 4 and 33, and General Comment No. 7 ‘Article 4.3 and 33.3: Participation with persons with disabilities in the implementation and monitoring of the Convention’ (Adopted 21 September 2018) make clear the importance of disabled people and their representative organisations being involved in all decisions affecting their lives.
 All public authorities have a duty to ensure that the equality impacts of any changes or reduction to services are considered in the context of the public sector equality duty (PSED). Having due regard to the aims of the PSED requires public authorities to have an adequate evidence base for their decision-making; engagement with people with protected characteristics is vital to this process. EHRC (2014), ‘The Essential Guide to the Public Sector Equality Duty: England and Non-Devolved Public Authorities in Scotland and Wales’. The UN CRPD further requires that states closely consult with and actively involve persons with disabilities through their representative organisations when developing and implementing policy and decisions relating to disabled people. UN CRPD Articles 3, 4 and 33, and UN Committee on the Rights of Persons with Disabilities, General Comment No. 7 ‘Article 4.3 and 33.3: Participation with persons with disabilities in the implementation and monitoring of the Convention’ (Adopted 21 September 2018).
 Association of Directors of Adult Social Services (June 2020), ‘Budget Survey 2020’.
 The Local Government Association (LGA) estimates that providers of adult social care services may face more than £6.6 billion in extra costs due to the coronavirus crisis by the end of September this year with maintaining safe staffing levels and providing PPE identified as the biggest drivers of these extra financial pressures. LGA (4 June 2020), ‘Social care providers face more than £6bn in extra Covid-19 costs’.
 Townson, J. (26 April 2020), ‘Homecare in the time of coronavirus’, United Kingdom Home Care Association.
 See for example, Brennan, S. (4 June 2020) ‘Discharges to care homes increased year-on-year during critical period’, Health Service Journal; and concerns raised in written submissions to the Health and Social Care Select Committee inquiry on ‘delivering core NHS and care services during the pandemic and beyond’ by the EHRC, Mind, Rethink Mental Illness, the National Autistic Society and Alzheimer’s Society.
 For example, we are concerned that reductions in social care provision for children and young people with special educational needs and disability could lead to an increase in the number of disabled children reaching crisis point and subsequently being admitted to inpatient units or held in restrictive settings, which would have implications for a number of human rights.
 These provisions cover England and Wales and include reducing the number of doctors needed to approve detention, extending or removing time limits and reducing oversight for forced treatment. Coronavirus Act 2020, Schedule 8, Part 2. See also Royal College of Psychiatrists (2020), ‘Legal matters - COVID-19 guidance for clinicians’.
 DHSC (19 May 2020), ‘Legal guidance for mental health, learning disability and autism, and specialised commissioning services supporting people of all ages during the coronavirus pandemic, version 2’ (accessed: 26 June 2020) (provides advice and guidance ‘where temporary departures from the [Mental Health Act] Code of Practice may be justified in the interests of minimising risk to patients, staff, and the public’).
 Changes to mental health tribunals in response to the pandemic are already in force in England and Wales, and could make it significantly harder for people to challenge their detention and treatment. Fewer tribunal panel members are needed to make a decision, pre-hearing assessments are waived, and decisions can sometimes be made without a hearing. Courts and Tribunal Judiciary (19 March 2020), ‘Pilot practice direction: health, education and social care chamber of the first-tier tribunal (mental health)’; Coronavirus Act 2020 (Commencement no. 1) (Wales) Regulations 2020; Mental Health Review Tribunal for Wales (2020), ‘Practice direction COVID-19’.
 Concerns about the challenges preventing the effective implementation of social distancing measures and protective measures in institutions are explored fully in our submitted evidence to the Women and Equalities Committee (WEC) inquiry on coronavirus (COVID-19) and the impact on people with protected characteristics.
 CQC (7 May 2020), ‘Our concerns about mental health, learning disability and autism services’.
 We were already concerned about use of restraint prior to the pandemic. Recent data shows 3,590 restrictive interventions on people with learning disabilities and autism in inpatient settings in February alone (including physical, chemical and mechanical restraint, seclusion and segregation), 605 of which were used on children. NHS Digital (21 May 2020), ‘Learning Disability Services Monthly Statistics - (AT: April 2020, MHSDS: February 2020 Final)’ (at LDA Monthly Statistics from MHSDS – February 2020: Reference Tables). This is an increase of 1,415 instances compared with the same period last year, though we understand there are some issues with data quality. See NHS Digital (16 May 2019), ‘Learning Disability Services Monthly Statistics - (AT: April 2019, MHSDS: February 2019 Final)’ (at LDA Monthly Statistics from MHSDS – February 2019: Reference Tables V2).
 See National Preventive Mechanism (30 March 2020), ‘Letter to UK Secretary of State for Justice Robert Buckland QC MP’.
 For example, we have raised concerns in our submitted evidence to the Transport Select Committee inquiry on the implications of coronavirus for transport that insufficient awareness of exemptions to the requirement to wear face coverings on public transport for disabled people, who may face particular difficulties with the requirement, risks placing them at a particular disadvantage.A number of stakeholders have raised similar concerns. See, for example, Transport for All (15 June 2020), ‘Statement on new regulation requiring face masks on public transport announced today’; Ideas for Ears (5 May 2020), ‘Survey results – impact of masks, 2m distancing & more’ (noting that 79 per cent of respondents with hearing loss said that face masks make life much harder for them).
 We have submitted evidence to the Business, Energy and Industrial Strategy Committee highlighting concerns that many of the barriers that disabled workers face in the workplace have increased due to the current crisis. EHRC (May 2020), ‘Evidence to the Business, Energy and Industrial Strategy Committee inquiry on the impact of coronavirus on businesses and workers’. These concerns include reports that employers are failing to provide reasonable adjustments so that disabled employees can work effectively; and that some disabled people are being threatened with redundancy if they do not return to work, despite having valid concerns about their health and safety in light of social distancing requirements.
 We are concerned that inequalities in the home-learning environment risk undermining the right to education and exacerbating existing attainment gaps for certain groups including disabled pupils. EHRC (May 2020), ‘Submission to Education Select Committee inquiry on the impact of coronavirus (Covid-19) on children’s services and education’.
 EHRC (April 2020), ‘Inclusive justice: a system designed for all’.
 See for example, Disability Rights UK et al. (April 2020), ‘Covid 19 and the rights of disabled people – statement supported by disabled people’s organisations and allies’;Inclusion London (June 2020), ‘Abandoned, forgotten and ignored: the impact of the coronavirus pandemic on disabled people, interim report’.
 Concerns summarised by Emma Boswell (National Usher Co-ordinator, Sense), Ali Harris (Chief Executive, Equally Ours) and Professor Lucy Yardley, (Health Psychology, University of Bristol and University of Southampton), oral evidence to Women and Equalities Committee, sub-inquiry on ‘Unequal impact: coronavirus (Covid-19) and the impact on people with protected characteristics’ (10 June 2020). See also EHRC (30 April 2020), ‘Letter to Prime Minister: Lack of British Sign Language (BSL) interpretation at UK Government daily Coronavirus briefings’.
 Across all age groups, disabled adults make up a large proportion of adult internet non-users. In 2017, 56 per cent of adult internet non-users were disabled, more than double the estimated proportion of disabled adults in the UK population as a whole at that time (22 per cent). See Office for National Statistics (4 March 2019), ‘Exploring the UK’s digital divide’.
 There are a number of models of disability. The medical model of disability implies that people are disabled by their impairments or differences, whereas the social model implies that people are disabled by societal barriers and discrimination. See University of Leicester, ‘The social and medical model of disability’. The UN CRPD is based on a social model of disability (also known as a human rights model), which stresses that disabled people are active rights’ holders, not the recipients of charity. The UK Government has previously made clear its commitment to the social model of disability. See UN Committee on the Rights of Persons with Disabilities (24 November 2011), ‘Consideration of reports submitted by States parties under article 35 of the Convention: Initial reports of States parties: United Kingdom of Great Britain and Northern Ireland‘.
 Pring, J. (25 June 2020), ‘Coronavirus: Peer calls for an end to use of ‘vulnerable’ to describe disabled people’, Disability News Service.
 As set out in UN Committee on the Rights of Persons with Disabilities, General Comment No. 7 ‘Article 4.3 and 33.3: Participation with persons with disabilities in the implementation and monitoring of the Convention’ (Adopted 21 September 2018).
 EHRC (May 2019), ‘Supplementary evidence to the JCHR inquiry into the detention of children and young people with learning disabilities and / or autism’.
 Joint Committee on Human Rights (2019), ‘The detention of young people with learning disabilities and/or autism, Second report of the session 2019’.