Written evidence from the Equality and Human Rights Commission (COV0159)

Adult social care and the right to independent living

Introduction

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.[1]

Human rights framework

2.     The coronavirus pandemic is putting unprecedented pressure on the social care system.[2] 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,[3] the prohibition on inhuman and degrading treatment,[4] the right to liberty and security,[5] and respect for private and family life,[6] without discrimination,[7] 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.[8] 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.[9]

The right to independent living

4.     The right to independent living[10] is about ensuring that disabled people are able to enjoy the same self-determination and independence within society as everybody else.[11] 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;[12] reductions in detention safeguards;[13] and barriers preventing equal access to community services and facilities.[14]

Changes to the provision of adult social care

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.[15] As a result, only those with severe needs were receiving support.[16]

7.     Pressures on the system have worsened because of the impact of the pandemic with increased demand for services and reductions in workforce capacity.[17] 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’).[18] While our concerns that these easements would be widely triggered have to date not materialised,[19] we are concerned by reports that local social care provision has nonetheless significantly reduced,[20] 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.[21]

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.[22]

10. A number of disabled people’s organisations (DPOs)[23] 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.[24] DPOs have also reported a lack of information and transparency regarding decisions taken by local authorities to reduce or change care provision.[25]  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.[26]

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.[27] These risks relate particularly to the right to life,[28] respect for private and family life,[29] and the right to freedom from inhuman and degrading treatment.[30]

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.[31] 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.[32] 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.[33]

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:

• Provisions for Care Act easements in the Coronavirus Act are repealed at the earliest opportunity.
• In line with its obligations under the Public Sector Equality Duty, the DHSC should increase its oversight of changes to social care provision across local areas and ensure that recovery planning and national policy decisions are informed by accurate and up-to-date data.
• Local authorities must engage with service users and DPOs[34] to ensure there is transparency and meaningful consultation about decisions relating to the allocation of care provision and the rights of those with care and support needs, in line with provisions of the Equality Act 2010 and the UN Convention on the Rights of Persons with Disabilities (UN CRPD).[35]

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.[36] Local authorities and care providers may face significant additional costs due to the pandemic[37] 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.[38] 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.  

Reductions in detention safeguards

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.[39] 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.[40]

17. The Coronavirus Act contains provisions to relax crucial safeguards for those detained under the Mental Health Act (‘MHA’).[41] While these provisions have not been triggered there is guidance in place that allows departures from the MHA code of practice,[42] and changes to the mental health tribunal are already in force, which could reduce people’s ability to challenge detention and treatment.[43] We are also concerned about the lack of available data on detention rates under the MHA. We recommend:

• Provisions that would relax safeguards under the MHA in the Coronavirus Act are repealed at the earliest opportunity.
• The DHSC amend the legal guidance allowing for departures from the MHA Code of Practice as soon as possible in order to guarantee all pre-pandemic methods of challenging detention under the MHA.
• The Government closely monitor and publish the current rates of detention under the MHA, disaggregated by protected characteristic and geographic location, and take action to address any disproportionate use of detention.

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;[44] 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.[45] A further concern for us is the potential increase in restraint and seclusion as a result of measures to reduce the risk of infection.[46] This is compounded by a lack of oversight while reduced inspections are in place.[47] 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.

Access to services

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,[48] public transport,[49] the labour market,[50] education,[51] and access to justice.[52] Concerns raised by DPOs about a failure by Government to engage with disabled people in planning the response to the pandemic,[53] and a failure to ensure accessible communication,[54] together with the increased digitisation of public services[55] and use of language centred around the medical model of disability[56] and vulnerability[57] 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,[58] to ensure that recovery planning is inclusive, compliant with equality and human rights obligations, and informed by the insights and experiences of disabled people.

Protecting the rights of disabled and older 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,[59] 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,[60] which was previously endorsed by the Committee.[61] 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.

14/07/2020