SOC0164 - Evidence on Adult Social Care

Written evidence submitted by the Centre for Welfare Reform [SOC 164]

The Centre for Welfare Reform is an independent think tank, based in Sheffield, with an international fellowship of over 80 social innovators and researchers. It believes in the equality of all human beings and the value of our diversity and works for a welfare state that supports citizenship, family and community. Dr Simon Duffy, who invented personal budgets, founded it in 2009.

This submission is supported by a wide alliance of individuals and organisations that form the Rethinking Care Group. [1]

Summary

• Adult social care is in a state of profound system-wide crisis, accelerated by austerity. It is breaching human rights and increasing rates of death and abuse.

• Legal and civil advocacy has been wholly inadequate to defend the right to social care for individuals or society as a whole.

• The system (including commissioning, care management and regulation) is rooted in the failed policy assumptions of the 1980s and undermines innovation and good practice.

• Where, against the grain of the system, good practice emerges it (a) promotes citizenship (b) strengthens family and (c) enables community cooperation.

• We need a new system of social care to combine universal, non-means-tested entitlements with local systems to prevent need and strengthen community inclusion.

• We recommend a root and branch reform of the whole system, moving responsibility away from the Department of Health, to create a new framework to promote citizenship for all.

Moral failure

1.1. The United Nations recently confirmed that the UK Government is breaching the human rights of its own citizens and it particularly highlighted the cuts in social care. [2]

1.2. Local government has been targeted for cuts, which are inevitably passed onto social care services, which makes up 60% of its discretionary spending. 509,000 fewer people received adult social care in 2014 than in 2009 (a cut of 30%) despite growing need. These cuts continue today, although the Government recently changed the data collection system, obscuring the data. [3]

1.3. This follows two decades of underfunding which has seen the gap between social care and other public services grow. The result has been to create an unattractive system with high levels of means-testing, low salaries and low levels of public support. It is estimated that 160,000 care workers are paid below the minimum wage. [4]

1.4. These cuts are devastating for many disabled and older people, particularly as they are combined with cuts in income and housing that increase poverty, social isolation and encourage family breakdown and crisis. [5,6,7]

1.5. These cuts seem to be increasing death rates for older people and seem to be making it difficult for people to leave hospital. Attempts to cross-subsidise social care from the NHS are ineffective and in breach of an explicit promise to protect NHS funding. [8,9]

1.6. Although the shift to personalisation has increased the quality of their lives for some, for most the reality of support is either residential care or domiciliary care delivered in 15 minute visits. Too often care is inhuman and disrespectful. [10]

1.7. Many people live in institutional services, associated with high levels of abuse. For example, 3,000 people with learning disabilities have been placed in hospital services costing £175,000 per year per person. Many more are placed in residential care services hundreds of miles from their own homes. [11,12,13]

1.8. Others are excluded from social care, despite having significant needs. For instance, research with people with ME found that 97% met the criteria for eligibility, but only 6% received support. Disabled people moving into adulthood find that their care packages are cut, stopping them from moving on to greater independence. [14,15]

1.9. The general approach to families is consistently described as damaging with, an absence of adequate support and with ineffective rights to represent their children, particularly as they enter adulthood. [16,17,18,19,20]

Advocacy failure

2.1. The general public have only the weakest notion of their entitlement to social care. Independent advocacy, information and funding for self-advocacy have all been cut. Deep cuts in legal aid have led to a 89% cut in social welfare cases. [21,22]

2.2. According to a leading expert in social care law, Belinda Schwehr “Legal literacy in social work education is at an all time low.” [23]

2.3. Most charities (with aggregate reserves of £42 billion) have retreated into a passive role, unwilling to lobby Government or to organise effective campaigns. This problem is worsening, after the Lobbying Act and with further restrictions coming into force. [24,25,26]

2.4. The official leadership bodies for adult social care (ADASS) and local government (LGA) are constrained by codes of conduct that make effective advocacy impossible. [27]

2.5. Within the Department of Health social care lacks effective representation, and the recent demotion of the social care minister is indicative of the unequal balance between health and social care. Nor is the integration of children’s social care with education helpful. Funding for long-term support, at any age, should not be divided between different departments, with all the inevitable boundary disputes and failures of responsibility. [28]

Policy failure

3.1. The Care Act 2014 promised to reform provision, but in practice its legal protections have been ineffective. One study found local authorities carried out fewer needs assessments during the first year of the Care Act than in the year before. [29,30]

3.2. Personal budgets have not developed as intended, constrained by damaging levels of bureaucracy and control. As the Parliamentary Accounts Committee found, personalisation in theory has not led to personalised support in practice. Most personal budgets do not give people meaningful control and Government data misrepresents progress. A recent report found that many local authorities were making budgets less flexible, which inevitably increases inefficiency. [31,32,33]

3.3. There is no empirical evidence to support the current regulatory system which struggles to identify abuse and plays no role in promoting good practice - most of which lies outside the scope of its own work. Genuine safeguarding must be rooted in active citizenship not in an institutionalised bureaucracy at a distance from communities. [34,35,36]

3.4. The system stifles innovation and humanity in care, without reducing risk. Long-standing intentional communities like L’Arche, genuine Camphill communities and other organisations that work to build relationships find their values undermined by systems that treat relationships as if they can be regulated. [37,38,39,40,41]

3.5. Commissioning systems are collapsing. Recent changes in Devon and Cornwall typify a common pattern, where commissioners limit choice to a small number of service providers working to framework contracts. [42,43]

3.6. Procurement systems breach human rights and damage the development of community services. None of this is legally necessary, in fact it is contrary to official policy, but it is maintained by a culture of top-down control, undermining the quality of care. [44,45,46]

3.7. The intention to strip older people of Attendance Allowance to subsidise adult social care is counter-productive and inefficient; it will only serve to increase poverty and reduce social capital. [47]

3.8. The intention to make local authorities rely on Council Tax and Business Rates contradicts natural justice, for social care needs do not correlate with these sources of income. [48]

3.9. The role of social workers was undermined in the NHS & Community Care Act of 1992 which bureaucratised their role. Today the profession is in disarray, the recent closure of The College of Social Work typifies its problems. [49,50,51,52,53,54]

3.10. Families are the bedrock of support for most people (for example, in Barnsley the support from families is worth £0.5 billion) but instead of respecting and supporting families the system encourages family breakdown. [55,56]

Good practice

4.1. Policy-makers talk about ‘community care’ but have in fact reinforced institutional care. Good practice emerges against the grain of the current system. The key to good practice is to support people to be citizens and to strengthen family and community life. The best (and most cost-effective) forms of support are those that build on people’s aspirations and strengthen their place in community. [57]

4.2. Local Area Coordination, originally an Australian innovation, is now being implemented in England by local authorities in partnership with the the Local Area Coordination Network. This embeds a coordinator within a local community who helps prevents need and avoid crises. [58,59,60]

4.3. Personalised support, originally a Scottish innovation, is beginning to be implemented in England by organisations like Beyond Limits and Choice Support. The service provider designs flexible support around the individual, using an Individual Service Fund (ISF). [61,62,63,64,65,66]

4.4. Peer support, where people support each other, is highly effective and efficient. For example, PFG Doncaster and IBK Initiatives enable people to minimise their use of statutory services and play a full role as active citizens. [67,68,69]

4.5. Organisations like Imagineer, Lives Through Friends and Grapevine show that people can achieve more if they are supported to be a part of the community, building relationships, rather than relying on services. [70,71,72]

4.6. Organisations like WomenCentre demonstrate how effective community-based social work can be in help families overcome complex problems. [73]

4.7. Arts organisations like DanceSyndrome, Mixit, Lythy and Omapolku demonstrate what is possible when you support contribution and creativity. [74,75]

4.8. Some authorities are starting to work with their local communities and encourage volunteering. Calderdale Council have transformed their domiciliary care services using ISFs. Barnsley Council’s Area Governance brings commissioning back down to the level of the community. [76,77,78,79,80]

Recommendations

5.1. The OECD report “on equity and efficiency grounds, a majority of OECD governments have set up collectively financed schemes for personal and nursing care costs. Many are also moving towards universal entitlements to coverage of LTC costs.” [81]

5.2. Australia has established the National Disability Insurance Scheme to provide all disabled people with an appropriate non-means-tested personal budget. This system was supported by a highly popular increase in taxation. [82]

5.3. In the UK the frequent reviews of adult social care funding have all been undermined by an unwillingness to take human rights seriously and a failure to look beyond residential care, despite the fact that residential care is both unpopular and in long-term decline.

5.4. There must be a radical reform of the organisation and funding of adult social care in order to establish a universal entitlement to support, combined with community services that prevents need and support family and community life. Such a system must be built upon the UN Convention on the Rights of Disabled Persons (UNCRDP) and in particular the Right to Independent Living (Article 19). [83]

5.5. In practice this is likely to need a whole new understanding of the relationship between central and local government and of the overall financial settlement for social care. The boundary of social care should be redefined to include all long term care. Current reforms in education and health to implement personalisation should be reviewed and integrated into one overall strategy for long-term support. [84]

5.6. Establishing these fundamental rights, at the heart of the welfare state, cannot be achieved from within the Department of Health. We recommend integrating all forms of long-term care under the leadership of the Department for Communities & Local Government for the purpose of supporting citizenship and strengthening community life.

References

[1] http://www.centreforwelfarereform.org/projects/rethinking-care.html

[2] http://www.centreforwelfarereform.org/news/uk-in-breachhuman-rights/00287.html

[3] http://www.centreforwelfarereform.org/library/type/text/data-on-social-care-in-england.html

[4] http://www.resolutionfoundation.org/publications/the-scale-of-minimum-wage-underpayment-in-social-care/

[5] https://www.gov.uk/government/organisations/independent-living-fund

[6] http://dpac.uk.net/2013/02/what-local-authorities-said-about-the-closure-of-ilf/

[7] http://www.centreforwelfarereform.org/uploads/attachment/354/a-fair-society.pdf

[8] http://www.telegraph.co.uk/news/health/12158930/Biggest-annual-rise-in-deaths-for-almost-fifty-years-prompts-warnings-of-crisis-in-elderly-care.html

[9] http://www.telegraph.co.uk/news/health/elder/12100703/Elderly-patients-are-refusing-to-leave-hospital-because-of-care-costs-NHS-bosses-fear.html

[10] https://www.unison.org.uk/news/press-release/2016/01/three-quarters-of-councils-still-insisting-on-15-minute-homecare-visits-for-elderly-and-disabled-people-reveals-unison-report/

[11] http://www.centreforwelfarereform.org/library/authors/doreen-kelly/getting-there.html