Independent living: the real and present danger

Abstract

Since 1996, people in the United Kingdom have been able to take cash to manage their own support to live life on terms equal to others – the concept at the core of independent living. This level of provision is now under attack. Levels of payments are being cut. Some disabled people are being forced into institutional care. Austerity is commonly blamed, but the facts do not support this. More likely is a change in attitudes. The positive sentiment of councils towards this form of provision may be evaporating. Only a fundamental systemic change is likely to halt the slide. The identification and costing of all needs for independent living should be a legal right, exposing the gap in funding. Feeding this information into the democratic decision-making process is the essential condition to making manifest the United Nations concept of ‘progressive realisation’ of the resources required for all to have independent living.

Keywords:

• Independent living
• austerity
• human rights
• future

Context

Independent living is increasingly an international aspiration. It is captured in Article 19 of the United Nations Convention on the Rights of Disabled People. At its core is the concept that disabled people should live their life ‘with choices equal to others’ (United Nations 2019). Given the broad definition of disability, the concept applies universally to people in need of support. In the United Kingdom, independent living has been synonymous with people taking cash to employ their own staff. The campaigning of the UK disabled people’s movement led to the Direct Payments Act of 1996. However, there are signs that this pioneering form of support is under attack.

Barnet Council, a local authority in Greater London, have planned to save money by placing disabled people in residential care, rather than supporting them to live at home, when it will cost less to do so (Disability News Service 2019). Barnet Council’s openness about their intentions may be unusual, but their approach is no one-off. A campaign by disabled people’s organisations to promote independent living noted that ‘Local authorities and Clinical Commissioning Groups are introducing maximum expenditure policies which threaten to force disabled people into residential care against their wishes’ (ROFA 2019).

Sector leaders invariably blame austerity for such cuts. Disabled people are inclined to accept this. The document that launched the disabled people’s campaign noted that ‘measures imposed through “austerity” and devastating cuts in social care are having serious adverse impacts that directly affect disabled peoples' rights and freedoms’ (ROFA 2019).

Is austerity really to blame?

But does this stack up? Real-terms spending in English social care had, allowing for inflation, reduced by just 3.3% since 2009/10 (National Audit Office 2018). To this can be added an estimated 6% growth in demand from demographic changes (Institute for Fiscal Studies 2018). This would make a real cut relative to need of 9.9%. However, sector leaders also point out that the primary effect of austerity has been a cut in the numbers of people supported. National returns (https://nascis.digital.nhs.uk/e) show that in 2009/10, 1.7 million people received services. In 2017/18 it was just one million people, a reduction of 41%. With the reduction in numbers of service users so much greater than the cut in resources, the level of resources available to each service user is greater, not less.

What other explanations might there be for councils targeting disabled individuals whose support costs are high?

Right or whim?

The Direct Payments Act was hailed as having established a legal right to independent living. The reality is that the Act did no such thing. It merely authorised councils to offer cash rather than services to individuals. The vital questions that determine whether independent living was possible for them – what needs to meet and with how much cash – remained a matter for the local authority to decide.

Within a few years, some 5% of service users were using a direct payment to employ their own staff and the percentage did not increase. The Department of Health (2010) urged councils to make direct payments their default option for all service users on the premise that this was the only approach to consistently deliver better outcomes. There followed a trebling of people with a direct payment. However, it was subsequently discovered that fewer than 30% of people with a direct payment were now employing their own staff (Skills for Care 2018). The increased numbers with a direct payment were simply paying the invoice of the traditional, regulated services they would have had anyway. The survey of personal budget holders by the body charged with progressing the personal budget strategy showed that it is only when direct payments are used to employ staff that outcomes are better (Think Local Act Personal 2015).

The trebling of people with a direct payment therefore had no impact on the numbers experiencing independent living.

An alliance that serves mutual interests

A key argument in support of giving people cash to employ their own staff is that it is more cost-effective. However, whilst cutting out the overheads of regulated services makes the hourly cost lower, the higher number of hours required to achieve independent living for people who need more hours of support can make the actual cost significantly higher (Slasberg and Beresford 2015). The cash value of the payments to those who have employed their own staff through a direct payment has been on average some 80% more than the value of support to all others (Slasberg, Beresford, and Schofield 2012). Given that councils have not been legally obliged to offer this level of support, and the context of the chronic levels of under-funding in social care, this begs the question as to why councils have done so. There are two main reasons.

The first is the strength, skill and determination of the disabled people themselves. While councils are able to impose upon most service users whatever meagre and institutionalising support they choose, there is an underlying intellectual weakness of the policy that dictates how needs are assessed and resources allocated that leaves councils vulnerable to determined and skilled advocacy (Slasberg and Beresford 2015).

The second reason is that it has been in councils’ interests to have some service users demonstrably enjoying authentic ‘choice and control’. This has enabled councils to claim they are ‘on message’. Successive governments in the era of the neoliberal political consensus have placed great value on the language of customer empowerment and ‘choice and control’.

It may be disturbing to disabled people to be confronted with the realisation that their success in securing the resources they require for independent living is indebted more to the whims and magnanimity of the state than to any legal rights.

Shifting sands

Even more disturbing will be the realisation that councils’ magnanimity may be evaporating. The policy rhetoric has shifted to the language of personal budgets. An ‘up-front’ allocation of money would bring ‘choice and control’ to all throughout the assessment and support planning process. With all service users now said to have a personal budget, councils can claim that ‘choice and control’ has been universalised.

Whilst it is now clear that the personal budget strategy has comprehensively failed (Slasberg and Beresford 2016), the rhetoric lives on. Councils have less need for the pool of high-cost service users demonstrably experiencing independent living to prove their credentials.

Councils will continue to remain vulnerable to those disabled people who have what it takes to secure the level of support they need. Mike Nolan of Inclusion Barnet is surely right when he says that Barnet Council’s new policy will ‘impact people least able to self-advocate’ (Disability News Service 2019).

A better future

The best answer for service users is a change in the primary legislation to make the resources for independent living a legal right for all. But the campaign to secure this faces two challenges which make success in the foreseeable future improbable. The first is that the cost is not known, but with fear it will be high. Second, the government will have to cease funding social care through a budget and move to ‘open cheque’ funding. The high variability between individuals in the level of support required to enable independent living, along with the unpredictability of demand, would make control of spending within a budget impossible.

What can be done now?

The core issue is control of spending. Barnet Council illustrate how councils do so by altering what is deemed to be ‘need’ through use of the traditional, resource-led needs test. They could instead control spending by assessing and costing the needs for all to experience independent living and then subsequently declare how many of those needs they can afford to meet.

This will not, in itself, prevent Barnet Council offering institutional care to people who can and should be living independently in their own home. But there will be very important differences:

1. Offering institutional care will be done with regret, sharing the pain of knowing it will diminish and institutionalise the person, possibly beyond repair. The council will not proclaim their decision as a triumph of good management, as Barnet Council have done.

2. The person will be told the truth that the council is taking this action because it does not have enough money, and that the extra money it would have cost to support them at home will have greater collective benefit for a greater number of others. The council will not say, as Barnet Council have, that it is being cost-effective, whereas it is cost-cutting. The cuts are achieved by the council taking the view that all of the needs living in one’s own home makes possible – such as dignity, identity, engagement in society – do not apply to disabled people, for whom they are reduced to being mere ‘wishes’ that have no legal value.

3. The person will be told the council is charged with doing everything in its power to ensure that the democratic process makes available the resources required to bring them back to their community as soon as possible. The council will not abandon them to a future with no hope, as Barnet Council have done.

4. Sector leaders will tell political leaders that the lives of people they have responsibility for have been seriously blighted by their inability to provide sufficient funds. Sector leaders will not reassure political leaders that all of the needs are being met, as Barnet Council have done.

5. Social workers will work in partnership with the disabled person, establishing and advocating for their real needs from within the system. They will not be the agent of an oppressive state system that seeks to deceive people into thinking they have less needs than everybody else, as Barnet Council will require their social workers to do.

Conclusion

The right to all of the resources for independent living for all is a prospect eminently worth campaigning for. But it is a distant ambition. Within grasp is making it a legal right for all needs for independent living to be transparently acknowledged and costed.

This is a direction of travel that may gather momentum. The UK Equalities and Human Rights Commission has been considering the changes required to secure the place of independent living within the domestic legislative framework. While its work is not complete, the outlines of its thinking were set out in evidence to a recent Parliamentary Inquiry (Equalities and Human Rights Commission2019). One of its proposed principles is that unmet assessed need should be a matter of record. The government should then periodically declare how they intend to close the funding gap. This would be carried out under the United Nations’ concept of progressive realisation of the resources required to enable independent living for all.

Disclosure statement

No potential conflict of interest was reported by the authors.