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    What happened during the first wave of Coronavirus and what can be done about it

    In the first wave of the Coronavirus pandemic, mortality rates for people in care homes were shockingly high. Many people living in residential care and nursing homes have cognitive impairments that make it hard for them to agree to their living conditions. In the spring and summer of this year, rights-based legal safeguards designed to protect people seem to have been ignored or set aside. The NHS and adult social care services are currently bracing themselves for a second wave. This article asks whether the safeguards are likely to be more robust this time around, and what can be done to ensure people’s rights are upheld in the future.

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    According to the Office for National Statistics, there were 19,394 Covid-related deaths among care home residents between 2/3/20 and 12/6/20. About half the people in this group were recorded as having a pre-existing condition of dementia. Many will have been assessed as not having the mental capacity to decide where to live, and consequently should have been subject to Deprivation of Liberty Safeguards (DOLS).

    DOLS were introduced in 2009 after a landmark case in the European Court of Human Rights. Deprivations of liberty can be authorised by local authorities where they are proportionate, where there is no reasonable alternative, and critically where they are in people’s best interests. Local authorities have always lacked the resources to process applications, and backlogs began to build up as soon as the safeguards were introduced. Another legal ruling in 2014 held that many more people were being deprived of their liberty than had initially been supposed, putting even more pressure on the system. In 2019 the law was amended to introduce a new, speedier system, though this was contentious because it allowed care home managers a greater role in deciding whether deprivations were necessary or proportionate. This had been due to come in this month (October 2020), but implementation has now been put back to April 2022.

    During the first wave of the pandemic, the larger numbers of people moving into care homes should have resulted in a bigger figure for DOLS applications. Instead, the Care Quality Commission (CQC) recorded a 31% reduction in DOLS applications between April and June 2020 compared to 2019. It seems that the requirement to ensure that restrictions were in people’s ‘best interests’ was being quietly ignored. As well as considering the rights of the 25,000 or so people who were discharged from hospital to care homes with Coronavirus, it’s also important to consider the risks to the much larger number who were already resident. As care home staff struggled to prevent cross-contamination with inadequate PPE and high levels of staff sickness, many residents were confined to their rooms in accordance with government advice. The Mental Capacity Act 2005 may only be used to confine people in their best interests; where the deprivation is for public health purposes different provisions should have been used. Research by Dr Lucy Series showed that public health provisions were only applied a handful of times. The point here is not to second-guess the actions of staff who were clearly doing their best to manage under very difficult circumstances, but to ask ‘What’s the point of legal safeguards if they can just be ignored?’.

    In June the Equality and Human Rights Commission recommended that  the “ … Government should urgently undertake or commission a review into deaths in care homes during the pandemic, in line with its equality and human rights obligations…”. One would have expected that in the pause afforded after the first wave of infections, lessons would have been learned and changes made.  Instead we have an adult social care winter plan that promises (but has not yet developed) a “…designation scheme with the CQC for premises that are safe for people leaving hospital who have tested positive or are awaiting a test result.” It seems that the government is anticipating that people with the virus will be discharged into care homes, but a process for this to be safely managed is not yet in place. At the same time revised guidance that suggests that where new restrictions are imposed to prevent cross-infection “…in many cases [they] will not be…” new Deprivations of Liberty. However, considering the significantly greater risk of mortality under these circumstances, it seems at least reasonable to question whether the original judgements about what is in a person’s best interests would still be valid.

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    The specific issue of DOLS is one of a large number where human rights seem to have been set aside during the initial Coronavirus outbreak. A report from Amnesty International published earlier this week found that the “…UK government, national agencies, and local-level bodies have taken decisions and adopted policies during the COVID-19 pandemic that have directly violated the human rights of older residents of care homes in England—notably their right to life, their right to health, and their right to non-discrimination.” Early on in the Pandemic there was concern that the frailty scale being used to decide whether people would get life-saving treatment was being used inappropriately with younger disabled groups, leading DHSC to issue urgent ‘clarification’. Last week the CQC was asked by DHSC to review the way that Do Not Attempt Resuscitation (DNAR) notices were used by clinicians. ONS data re-analysed by Prof. Chris Hatton shows in-patients with autism and learning disabilities were subjected to more restraints during the pandemic. Organisations such as Inclusion London, Inclusion Scotland and Disability Rights UK have highlighted linked concerns among other groups of disabled people. During the outbreak the majority of disabled people experienced difficulties accessing basic care, medicines and food. Many of these organisations have joined the EHRC and Amnesty in calling for an inquiry into the events of this year, and ultimately for stronger legal guarantees.

    Another important lesson relates to funding. The lack of social work capacity for DOLS authorisations, wider under-staffing and poor pay in the care sector, and the absence of alternatives to ‘congregate’ care have all contributed to the events described in this article. Adult social care services have been subjected to growing demands and reduced resources for over a decade. Why is it that vital local social care services are still facing massive financial shortfalls at the same time that central government is putting record sums into the NHS and privatised test-and-trace services? An urgent solution to funding in adult social care is also a necessary component of any solution. Many argue that this will only be politically viable when social care is seen not as a destination but as a vehicle for helping the people we are and the people we love to lead rich and full lives. These three strands – a brighter vision, a new financial solution, and stronger support for human rights – can form a common ground for campaigning and activism that can help us future-proof social care against similar crises in the future.

    Jon Hyslop, Oxfordshire Branch, 19/10/20

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    The Local Government Association, on behalf the broad leadership of the social care sector including the Association of Directors of Social Services, has published a set of 7 principles to guide the future of adult social care post Covid. But they show the sector’s leadership continuing to be high on rhetoric, but empty on substance. They are bankrupt of ideas to make the rhetoric a reality.

    The 7 principles talk, for the umpteenth time, of social care needing to be based on ‘what works for people, not what works for systems or structures’. They seek to emulate the person centredness that makes the NHS so valued by the public. People trust that when they present symptoms to an NHS clinician the diagnosis and treatment will be based solely on the clinician’s knowledge of what is wrong and what is possible. It would not even occur to the person that the determination of their diagnosis and decisions about the treatment options will be referred upward to a manager, least of all to a manager whose primary task is to manage the budget.

    But, for reasons set out in my recent blog, this is exactly what happens in social care. At the individual level, while need precedes resources in health care, resource precedes need in social care. It’s an arrangement that serves very well the political expedients of keeping spend precisely to budget while denying the existence of any funding gap. The sector’s leadership, sadly and only too willingly, obliges.

    So sector leaders are left yet again repeating mantras with a long record of failure. The history is lamentable.

    Following the failure of the Community Care strategy of the 1990’s to make social care ‘needs led’, the personalisation strategy was launched in 2008 with personal budgets the centre piece. ‘Up-front’ allocations of money would empower service users to purchase their own support package, the ultimate in person centredness. Bu it quickly became apparent that up-front allocations would not happen. Completely impracticable and ignored by the Care Act ‘up-front’ allocations became ‘indicative’ only and thus tokenistic. In 2012, Think Local Act Personal, the organisation charged by Government with leading implementation of the strategy, issued a series on exhortations to practitioners and councils under the banner Making It Real.

    The irony in the implicit message that personal budgets had completely failed to ‘make it real’ was lost on the sector’s leaders. Inevitably, Making It Real had no impact. TLAP duly issued a second iteration of Making It Real in 2018. It too has had no impact. And so to the present and the 7 principles amount to yet a third exhortation to ‘make it real’.

    Exhortations to practitioners and councils to deliver ‘what works for people’ are hopeless in the face of underlying, powerful systemic forces that ensure the system’s priority is to work to sustain itself.

    What of the future for social care – integration with the NHS?

    It’s hard to imagine anyone taking the analysis and remedies of sector leaders seriously. This is not just because of the self harm in exposing the bankruptcy in their own ideas. Covid’s exposure of the impoverishment of social care invites questions of the leadership Councils have provided over the decades. Is it really just about government under-funding? How soon, if not already, before Councils are seen as a busted flush?

    Signs are pointing to integration with the NHS as the political solution. But with social care in its present state, that would be a disaster for both services and the older and disabled people who rely on them. The NHS is at its best delivering clinical care to deliver best possible health. When it moves beyond that into care, its record is even more lamentable than that of local authorities. The bureaucratic opaqueness and gross inequity of Continuing Health Care bears witness to that. A weak and unreformed social care service risks being reduced to little more than a servant to health objectives. This would sound the death knell of the ambition of social care to be the driver of our older and disabled citizens being supported to lead the fulfilling and dignified lives they are capable of.

     

    Colin Slasberg – former Assistant Director of Social Care and Independent Consultant in Social Care.

    Comments Off on THE FAILED LEADERSHIP OF SOCIAL CARE, BANKRUPT OF IDEAS

    At a time of heightened public interest in the future of social care, what would be the way forward guided by the principle of social justice? Some of it is in plain view and takes the form of immediate funding shortfalls. The only issue is the political will to find the money. Important as these issues are, their resolution will do nothing to redress what many believe is the most painful injustice of all. The system used to identify ‘need’ and allocate resources – based on the eligibility ‘needs test’ –  is not only inherently inequitable but works in a way that deprives the individual of the control over their lives essential to us all for our dignity, self worth and wellbeing. The system built around the needs test is obscure to the public and has no public appeal. It need be no surprise that social care cannot muster the political will to address the more obvious funding shortfalls.

    For a truly socially just system the ‘needs test’ must be abolished and replaced with a system that manages the tension between needs and resources very differently. This will not require more money. But it will require political will and the intellectual effort for new thinking.

    The immediate funding issues

    Before considering the needs test, it may be worth reflecting on the immediate funding issues.

    The issue presently uppermost in the public mind is the undervaluing of care staff. With something like 1 million care staff, every pound an hour they are paid will cost about £1.8BN

    Not far behind that in the public mind, and with a political head of steam developing to do something about it, is the means test. It results in the unfairness of the ‘dementia tax’, of people having to sell their houses to pay for care, and of as many people funding their own care or going without as receive state support.

    There are two proposals to reform the means test. One is the idea of the ‘care cap’ – a lifetime limit to how much an individual would have to pay in charges. Introduced by the Dilnot Commission in 2011, it is estimated this would cost in the region of £3BN. The other is to make all ‘personal care’ free as in Scotland. The House of Lords Economic Affairs Committee favours this and costed it at £7BN last year.

    A third would be to simply abolish the means test altogether (or charge only the ‘hotel costs’ of a residential care placement which was the very limited intention when the means test was introduced by the Attlee Government in 1948). The cost would likely to be somewhere nearer to £15BN.

    There would be some good news for the Treasury from a system driven by social justice. It would surely bring an end to public companies raking in excess profits. Research by the Centre of Public Health Information established that some £1.5BN is leaked out of the residential care market in this way. That amounts to some 10% of the value of the residential care sector.

    The gross spend on social care is currently £20BN. Addressing the means test and paying a fair price for care to ensure care workers are properly remunerated could potentially double that. But doing all of this would be leave the fundamental nature and character of the service unchanged.

    The eligibility needs test

    A founding principle of the NHS was that need will precede resource and that the resource would be publicly funded.  This has arguably been the principle that, whatever its faults, has made the NHS an enduring beacon of social justice.

    However, when it came to the care of older and disabled people this principle was reversed. The priority of the Attlee government was to end the grave injustice of the institutionalisation of older and disabled people in workhouses. Poor Law Boards would be abolished and responsibility transferred to Local Authorities. But when asked in Parliament what Local Authorities would actually do, the Minister for Health replied ‘as much as our resources will allow’.

    Surely unintended, this had two devastating consequences. It implicitly put care of older and disabled people at the back of the queue for public resources, leading it to its Cinderella status. Secondly, it reversed the polarity of needs and resources. Instead of need determining resource, resource would determine need.

    The modern manifestation of the principle is the concept of ‘eligibility criteria’. The justifying theory is that there is a body of ‘needs’ for care and support that can be applied to any and all. Application by all councils of the same ‘eligibility criteria’ will ensure fairness and equity. It’s a theory that has superficial appeal. It is unchallenged. All councils claim to be delivering the National Eligibility Criteria (currently established under the Care Act of 2014).

    It is, however, a myth without mitigation. In a system where need must be determined by resource, it’s the local resources that must be the driver. The ‘eligibility’ decision must be localised to local budgets. National criteria are irrelevant.  They are, indeed, written in a way that makes the key decisions meaningless. This is necessary for local discretion.

    Not only is this localism logically the case, the empirical evidence leaves little room for doubt. Councils report annually on how many people they support and the amount they spend in doing so. Dividing one by the other – which government reports do not do – gives the average spend per person. Once adjusted for regional price differences, this surely gives the best measure of equity. The highest spending councils in 2018/19 spent an average of £22.7K and the lowest £12.9K – an astonishing 70% difference.

    This is no random unevenness that can be explained away as the uniqueness of communities served. There is a clear pattern. Deprivation of communities served is the key factor. The means test results in the most affluent communities serving 50% fewer people per head of population than councils serving the most deprived communities. Councils spending the most can spread the jam much more thickly. The highest spending councils serve communities significantly more affluent than the lowest.

    So to the inequity is added injustice.

    The damage does not end there. The eligibility process works by standardising ‘need’. Standardisation cannot be made to fit with the highly individual nature of the lived experience of need. Needs arise from the complex interplay of a host of factors each of which are themselves highly variable. It has become a modern cliché that each person is ‘expert in their own needs’. The cliché is reduced to lip service when delivered in a system which allows the person to express only ‘wishes’ while the council determines their ‘needs’. It’s infantilising. It is inaccurate as a way to identify need and therefore inefficient.

    Failure in delivery of the principle must not be allowed to dim the importance of the principle that individuals are indeed the best experts in their own needs. Their view of their needs should prevail subject only to their view making best use of resources to enable them to have their best level of wellbeing.

    There will be a dividend for the Treasury.  The greater accuracy of the assessment will mean much greater for value for money from the resource made available. The sector itself believes, although wrongly ascribing blame on poor social work practice, that the current eligibility driven system wastes significant levels of resource through poor use of resources.

    Why does the eligibility needs test persist?

    The needs test has survived since 1948 and defeated countless attempts at transformative change of social care. These include the Community Care reforms of the 1990’s and the more recent personalisation strategy.

    Why is it so enduring? Again, the answer is plain. It serves two political expedients. Firstly it keeps spending to budget, no matter the real need. Secondly, it ensures there is never any record of unmet need. This is important because, in contrast to the NHS where growing waiting lists in the NHS creates political pressure, there is no equivalent in social care. Sir Chris Wormald, Permanent Secretary to the Department of Health and Social Care told the Public Accounts Committee, who wanted to know how much funding social care needed, told them that councils had all the money they required to meet their responsibilities under the Care Act. What he didn’t say was that would be true no matter the size of the budget or the level of real need.

    What will it take to abolish the needs test?

    One obvious answer is to guarantee funding will meet all needs to ensure all have the quality of life they can reasonably expect. But the uniqueness of individual needs and the huge variability in the cost of meeting them would mean social care could have to be delivered on an ‘open cheque’ basis. No public service, not even the highly valued NHS, enjoys that. Credibility demands that strategies assume social care will continue to be delivered within a budget not likely to meet all needs. Success is to be measured by the smallness of the gap between needs and resources.

    Can the needs test be abolished in a budgeted system?

    The answer is an unequivocal ‘yes’. ‘Need’ must be identified in the context of securing the quality of life reasonable for each older and disabled person to expect through. The resources must make the best use of resources but without regard to what happens to be available. The United Nations definition of Independent Living provides a ready made standard of wellbeing to adopt. This would put the UK in the forefront internationally. From that point, decisions must be made as to how many each of those needs the council can afford to meet. Spending will be controlled to budget. However, it no longer be through eligibility of need but by affordability of need.

    The law, through the Care Act, has already made this possible. It provides for ‘need’ to be assessed against 9 dimensions of wellbeing. These dimensions are synonymous with Independent Living. The Act also creates the legal conditions to enable councils to say if they can or cannot afford to meet need. None of these provisions are currently being used. They are being ignored by councils as, under the influence of the Government’s Statutory Guidance to the Act, they are perpetuating a localised eligibility process.

    In February the Labour opposition in Barnet put forward a 4 point plan to replace eligibility of need with affordability of need as the means to control spending. This was to ensure the assessment process was able always to put the person and their welllbeing at the heart of their assessment process and to ensure the Council would be aware of any gap in funding between needs and resources. The Conservative administration rejected the proposal. They believed the Council was already delivering the Care Act and its wellbeing principle, that resources never interfere with the assessment of need, and that choice always determines what people received. The Labour group is currently testing the veracity of those claims.

    Will the needs test be abolished?

    The key issue is political will. The gap between needs and resources will be publicly exposed. What waiting times do for the NHS in creating political pressure, unmet need will do for social care. Political leaders will have to leave behind the comfort the eligibility system has provided them. The greater the funding gap given authenticity through deriving from the aggregated lived experience of need, the greater the political discomfort. But it can be expected the public narrative will shift from what ‘social care’ requires to what older and disabled people require. Few people understand or care about the former, but many are likely to about the latter. Currently councils are seen as visionless machines, employing what Tracey Lazard of Inclusion London (a network of disabled peoples’ organisations) describes as ‘dark arts’ to ensure the system’s delivery under cover of misleading public messages. Councils will be on the side of the older and disabled people they serve, free to promote public understanding of the real needs within their communities.

    Insofar as public sentiment drives political will, social care will stand a much improved chance of securing the funding it truly requires.

    Conclusion

    The needs test, and all its attendant ills, is the unintended legacy of what was otherwise a great reforming Labour government. Although understandable in the context of the 1940’s, rectification is long overdue. There is a clear moral argument that it falls to Labour to ensure it happens.

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