Part 1: Towards a National Care, Support and Independent Living Service, locally co-produced
The Covid pandemic and the failures of government policies have had a disastrous impact both on care workers – short of pay and protection – and those receiving support and assistance, left without testing and often isolated from their families, writes Richard Hatcher. It has dramatically revealed the underlying crisis of the whole social care system: under-funded by the state, not free to use so draining many users’ bank balances, while investment fund owners syphon off the profits. Now is the opportunity not just to tackle the immediate problems of funding and staffing but to build broad support for a very different model of social care. At the centre has to be not only the rights of care workers but the rights of those receiving services. And that means rethinking the whole concept of social care.
Of the workers providing adult social care in England 465,000 work in care and nursing homes, 610,000 provide support and assistance in people’s homes, and 150,000 provide day and community care. The total is over 1.2million. That is about four times the 320,000 nurses in the NHS. The care sector has always struggled to recruit enough staff because of its reputation for low pay and the lack of recognition. It’s estimated that there are currently 122,000 full-time equivalent vacancies in England. The large majority of workers, about 80%, are women on low rates of pay. 
There are 15,517 residential care homes in England, most privately run, with an estimated 457,361 beds. There is no official data on the exact number of residents but with occupancy rates of about 90% that means about 411,000 residents.
Each week in the UK it is estimated that 540,000 people receive support in their own home. That adds up to a million home-care visits happening each day. What’s provided on these visits can range from help going to the toilet to preparing a meal or support with medication. A 2016 UNISON survey found that more than half (58%) of domiciliary care workers have been given just 15 minutes or less to provide personal care, sometimes for people they had never met before. The majority (74%) said that they do not have enough time to provide dignified care. Around 70,000 disabled people in England employ Personal Assistants. Between them they employ 145,000 PAs.
Unlike the NHS, funding for social care is provided through local councils. And also unlike the NHS, ASC is not free for all. Some services are provided free but most are means-tested. The savings threshold for local authority funding in England is £23,250. Elderly and disabled people with assets above the threshold do not receive help from local councils towards care costs.
Rethinking social care, remaking social support
The title of Bob Williams-Findlay’s talk at the Reclaim Social Care online meeting on 20 August was ‘Recognising the tensions and contradictions surrounding the ‘Crisis within Social Care’ from a Human Rights perspective’.  Bob is a member of RSC and of the Reclaim Our Future Alliance. His book, More Than a Left Foot, was published this year. Here are some extracts from his talk:
There is still a stereotyped perception that ‘Social Care’ is simply about ‘looking after older people’ which means other groups in need of ‘social support’ are either ignored or subjected to inappropriate services.
It is vital to acknowledge different perspectives among service users; hence, I quote:
“…the words ‘care’ and ‘carer’ are regarded by the disabled people’s movement as paternalistic and dependency creating when used with reference to disabled people. Social ‘support’ is currently considered the more appropriate phrase for disability related services. Adult disabled people require …. ‘support workers’ or ‘personal assistants’”
The word, ‘independent’ here does not refer to being ‘self-reliant’ or rehabilitated to ‘live independently’, but rather to making decisions regarding one’s own preferences and lifestyles. John Evans, a founder of Independent Living in the UK, explains that it is “the ability to decide and choose what a person wants, where to live and how, what to do, and how to set about doing it. These goals and decisions about a person’s life and the freedom to participate fully in the community have been and will continue to be the essence of what Independent Living is. It is also the taking and establishment of self-control and self-determination in the total management of a person’s everyday life and affairs. It is about ensuring that all disabled people have the equality of opportunity in the chances and choices of life like everybody else.”
Reclaiming Our Futures Alliance’s vision for a new service seeks to find a way of taking disabled people out from being trapped between a rock and a hard place – the old fashioned paternalistic social democratic welfare state methods of service delivery, on the one hand, and the neoliberal marketisation of service provision, on the other.
This Human Rights perspective entails empowering service users both within the support setting but also in the social policy decision-making process itself, as research by Marion Barnes (2009) has demonstrated:
Collectively, service users have developed alternative ways of understanding disability, mental illness and caregiving, have claimed the right to construct their own identities and have unsettled taken-for-granted assumptions about social relations, not only between providers and users of welfare services at the point of delivery but also in the process of deliberation about social policies. (p232) 
This approach to redefining social care is the basis of the policy adopted by Reclaim Social Care in July 2020:
Campaign for a National Care, Support and Independent Living Service (NaCSILS)
- National Care Support and Independent Living Service (NaCSILS)
The Government shall have responsibility for and duty to provide a National Care and Supported Living Service to provide care, independent and supported living, adopting into English Law Articles from the UN Convention on rights of disabled people that establish choice and control, dignity and respect, at the heart of person-centred planning.
- Fully funded through government investment and progressive taxation, free at the point of need and fully available to everyone living in this country.
- Publicly provided and publicly accountable:
The NaCSILS will have overall responsibility for publicly provided residential homes and service providers and, where appropriate, for the supervision of not-for-profit organisations and user-led cooperatives funded through grants allocated by the NaCSILS. A long-term strategy would place an emphasis on de-institutionalisation and community-based independent and supported living. All provision will deliver to NaCSILS national standards. There will be no place for profiteering and the market in social care will be brought to an end.
- Mandated nationally, locally delivered:
The Government will be responsible for developing within the principles of co-production, a nationally mandated set of services that will be democratically run, designed, and delivered locally. Local partnerships would be led by stakeholders who are delivering, monitoring, referring to or receiving supported services or budgets, e.g. organisations representing disabled people (DPOs), older people, and people who use mental health and other services, in partnership with local authorities and the NHS.
- Identify and address needs of informal carers, family and friends providing personal support: The NaCSILS will ensure a comprehensive level of support freeing up family members from personal and/or social support tasks so that the needs of those offering informal support, e.g. family and friends, are acknowledged in ways which values each person’s lifestyles, interests, and contributions.
- National NaCSILS employee strategy fit for purpose:
The NCSLS standards for independent and supported living will be underpinned by care and support staff or personal assistants who have appropriate training, qualifications, career structure, pay and conditions to reflect the skills required to provide support services worthy of a decent society.
- Support the formation of a taskforce on independent and supported living with a meaningful influence, led by those who require independent living support, from all demographic backgrounds and regions. This would also make recommendations to address wider changes in public policy
The Social Care Composite Resolution passed at Labour Party Conference September 2019 was put together from motions from across the country, many based on Reclaim Social Care’s policy. It is now Labour Party policy. Here are some extracts:
“Labour to develop a universal care and support service working with user groups, in collaboration with a national independent living support service and available to all on basis of need….
Locally democratic and designed by service users and carers in partnership with LAs and the NHS, delivered as far as possible by service users.
Publicly, democratically run services, designed and delivered locally, co-productively involving local authorities, the NHS and service users, disabled people and carers.
Conference resolves that within the first term of a new Labour government to provide a universal system of social care and support based on a universal right to independent living. ”
This resolution applies to social care and support the framework for a new approach to public services developed in some Labour Party documents which were published under the Corbyn leadership and which are still very relevant. Democratic Public Ownership, a consultation report published in September 2018 with a Foreword by John McDonnell and Rebecca Long-Bailey, establishes some principles and arguments which have fundamental implications for local councils and services such as social care. 
“Public utilities, services, and other enterprises were owned for the public, but the public itself had little say in how they were run and for what purpose.
Democratic participation can enhance the effectiveness of publicly owned enterprises by tapping into grassroots forms of knowledge from the direct experience of employees and users of public goods and services.
New forms of democratic ownership should incorporate the users of public services as key stakeholders in the decision-making process. (no page numbers)”
In June 2019 the Labour Party developed the policy of participation further in the report From Paternalism to Participation: Putting civil society at the heart of national renewal. 
“Labour wants people to have a bigger say over the public decisions and the public services that affect them, with more direct accountability to service users where possible.
We will promote collaborative decision making, encouraging public service providers to involve their service users in taking decisions about how those services are run, the outcomes they are working towards, and the support they offer. This cannot be limited to consultation alone – people need the power to assert their voice when those in power refuse to listen, and civil society has an important role in acting as their advocates and champions. This will mark a radical change from top-down approach to public services and put services users and front-line workers in the driving seat. (p10)”
What is so important and innovative about these reports is that they stress the necessity of service users as well as workers being involved in the decision-making process, both at local government policy level and at the operational level of service delivery.
- Centre for Research on Socio-Cultural Change(2016) Where Does the Money Go? Financialised chains and the crisis in residential care. https://foundationaleconomycom.files.wordpress.com/2017/01/wheredoesthemoneygo.pdf
- Susan Pashkoff (2020) Feminism and Disability. 1 August. https://socialistresistance.org/oppressed-on-many-fronts-womens-labour-disablism-and-the-working-class/20515?fbclid=IwAR1EJvki2c4s5SyPgRZ4y8jRAhcod_PLbh58uqjXW8kcQ7NOYldleHcgIn4
- Bob Williams-Findlay (2020) ‘Recognising the tensions and contradictions surrounding the ‘Crisis within Social Care’ from a Human Rights perspective’. 20 August, on Reclaim Social Care. https://www.reclaimsocialcare.co.uk/assets/documents/bob-wf-notes-aug20
- Barnes M (2009) Authoritative consumers or experts by experience? User groups in health and social care. In: Simmons R, Powell M and Greener I (eds) The Consumer in Public Services: Choice, Values and Difference. Bristol: Policy Press, pp. 219–234.
- The 2019 Labour Party conference Social Care Composite Resolution is on the Reclaim Social Care website: https://www.reclaimsocialcare.co.uk/policy/
- The Labour Party (2018) Democratic Public Ownership. https://labour.org.uk/wp-content/uploads/2018/09/Democratic-public-ownership-consulation.pdf
- The Labour Party (2019) From Paternalism to Participation: Putting civil society at the heart of national renewal. https://labour.org.uk/wp-content/uploads/2019/06/Labour-Civil-Society-Strategy-June-2019.pdf