The Equalities and Human Rights Commission has published a document setting out how independent living, as defined by the United Nations’ Convention on the Rights of Persons with Disabilities, can and should be written into domestic law. The document addresses the breadth of issues relevant to independent living, including recommendations relevant to such as transport and housing. As far as social care is concerned its recommendations describe a route to a newly envisioned but financially sustainable future built to deliver independent living.

What is independent living?
It is first important to understand what the UN means by independent living. It is firstly about living in the place of one’s own choosing, whether in one’s own home or communally, and secondly being able to make all the day to day choices that non disabled people take for granted. It applies to people of whatever age and whatever their impairment of body or mind. It applies as much to an older person wanting to choose the time they go to bed as to a younger person wanting to make their full contribution to society. In other words, it applies to every person in need of care and support.
This is a different understanding from its original meaning created by the disabled people’s movement in the 1980’s. In relation to care and support, independent living was an alternative service model whereby the person managed their own support staff in their own home. Made possible by the 1996 Direct Payments Act, it has been a very successful model in the 25 years since for people with the skills, energy and time to make it work.

Independent living and wellbeing

The Commission notes the close relationship between the wellbeing principle of the Care Act and independent living. If a person can tick all nine of the wellbeing boxes of the Care Act – including as they do control over the person’s life and services, dignity and living in a home of their choosing – they will have independent living.
How can it realistically happen?
Resources are, of course, key. How can you reconcile such an ambitious vision with having to work within budgets settled in the hurly burly context of competing interests for limited public funds?
The key is to acknowledge the simple and self evident truth that the adoption of any person centred ambition, whatever it might be, cannot be guaranteed to be affordable within existing resources. There will be a measure of unmet need. The test of society’s commitment to the vision will be the scale of unmet need.
The UN approach to the resource challenge is straightforward. It does not expect states to make the resources required for independent living a legal right or in any other way guarantee all the funding required. What it does expect is that states adopt a strategy of progressively realising the resources that are required.
The Equalities Commission accordingly reflects this approach. It believes the Secretary of State should periodically set out plans for how the resources required will be progressively realised.
The start point for these plans must be knowing the true scale of unmet need.

Making the plan a reality
The first inescapable requirement must be real time information about the scale of unmet need at any point in time. That will require the wholesale transformation of the way needs are assessed, support planned and resources allocated.
Whilst the law does not require it, policy in England, as in other parts of the UK, prohibits exposure of unmet need.
An entirely new system of assessing need and allocating resources will be required. Assessments must start from the vision of what each person needs for independent living. Practitioners must identify and cost all such needs for every older and disabled person in need of care and support. Budget holders must control spending not by controlling the local eligibility threshold, but by making decisions about what they can afford. They must learn to secure the greatest degree of independent living for the greatest number of people their budgets allow. IT systems must capture information about needs met and unmet for strategic reporting.

Political benefits
Political leaders may not like being put on the spot in the way the Commission’s recommendation might suggest. However, it would be hard to mount an argument against its reasonableness. It does nothing more than expose political leaders to their responsibilities.
But they can look forward to a silver lining – the banishment of the fear of social care as a bottomless pit of demand. The vision of independent living would create a positive, aspirational context for understanding ‘need’. Research has long shown that support plans built on the best that life can be for the persona and on their strengths, no matter how dire their circumstances, require less public resource than plans built on how bad life is and on their deficits which, it is widely acknowledged, is the hallmark of the current system. The need for, and existence, of stand alone ‘strengths based’ strategies testifies to as much. Swimming against a powerful tide, ‘strength based’ strategies are doomed to fail. The tide must be turned so that ‘need’ is routinely understood in the context of making life as good as it can be for the person. Support plans will be built on the person’s strengths as a matter of routine.

Scotland
Interestingly, as Peter Beresford and I previously pointed out, Scotland is ahead on this agenda. It is on the cusp of contemplating such a transformation. Its review of social care has recommended a new paradigm, one that will deliver on human rights with independent living at its core. Whether or not the Scottish government makes the leap is a matter of international as well as domestic interest.

Conclusion
This change can be achieved without legislation and instead through moral compulsion and pragmatic good sense. It can happen now. It will not require a single penny more for new services. The only ‘price’ is political courage and integrity.
At the heart of the change is reversal of the dynamic between needs and resources. A founding principle of the NHS in 1948 was that need must always precede resource. If not always working perfectly, by and large it has survived. We expect clinicians to say what is wrong with us and what modern treatments can do to the best of their knowledge. Waiting times provide a safety valve if need exceeds resources.
In social care, the reverse was applied. In passing responsibility for the care of older and disabled people from Poor Law Boards to local authorities, when pressed in Parliament on what local authorities would do, Nye Bevan as Minister for Health said they would do ‘as much as resources allow’. No doubt the best answer at the time, the surely unintended consequences were to put social care at the back of the queue for public resources and set it on the path of a resource led definition of need resulting in the tyranny of ‘eligibility criteria’.
The Commission’s recommendation would require social care to be placed on the same footing as the NHS in how needs and resources are reconciled. It amounts to nothing less than the ‘1948 moment’ increasingly being heard by the likes of Nicola Sturgeon as being what social care requires.

Colin Slasberg is a social care consultant

This post makes an important contribution to the debate on the provision of social care in England and is not a reflection of the SHA’s policy.

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2 Comments

  1. Prof. John Wattis says:

    How does this apply to people with moderate to severe dementia? Most people residents in care homes suffer from a degree of dementia and are there precisely because they cannot live ‘independently’. Some, of course with family carers living with them, can live relatively independently provided the family carers receive enough support (which is rare). But many are beyond the capacity of even well-supported family carers. People with dementia should not be neglected any more than they are already so how would this development help them?

  2. Colin Slasberg says:

    The concept of being able to make the day to day choices important to the person is every bit as relevant to people with dementia as any other person. They may need to have around them people not just responsive to those choices but able to understand what their choices are. If they are in residential care, under the present system its in the lap of the gods whether that is the case. Some providers are excellent, imbued with an authentic public service ethos and skilled and caring workforces. Others are frighteningly indifferent to the wellbeing of their residents to the point of abusiveness. The issue is that the local authorities who put these services in place are themselves indifferent. Under the current social care paradigm the greatest volume at the lowest cost is the mission of strategic commissioning – ‘stack ’em and sell ’em cheap’ as the President of the the Association of Directors of Social Services told the Health and Care Select Committee last year. This is mirrored at the individual level where social workers are forbidden to leave any ‘need’ unmet. Councils turn their backs on unmet need, such as under-resourced provision where providers are being allowed to run away with excessive profit at the expense of the front line. Too often it is not until the media expose it that abuse of vulnerable residents is known.

    The Equalities Commission recommendation would be a game changer. Councils will be charged with creating the services that deliver Independent Living (given its proper meaning) and required to report to central government the extent to which their resources fall short. This will not guarantee all the right services overnight, but it will overnight commit local authorities to set about making things rights and not just ring their hands about not having enough money.

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