The Court of Appeal’s decision to allow the appeal against closure of the Independent Living Fund has given us a chance to step back and consider why we are really opposed to the closure of the ILF. Up until now the main focus has been on how the closure would be a disaster for disabled people because local authorities are not in a position to make up the shortfall when responsibility is transferred to them (see, for example, this excellent analysis by DPAC).
However, this is an argument that belongs to this point in time, in the context of the draconian cuts to local authority budgets. There are those who argue that, if personalisation of social care was properly funded and properly implemented, then it would make sense for disabled people’s independent living needs to be met by social care services.
But would it?
Consider the history of the Independent Living Fund. It was set up to replace the Domestic Needs Allowance, a social security payment which covered the additional costs of those people who needed help with ‘ordinary domestic tasks’ like cooking and cleaning (see my previous blog). It was thus part of a system based on entitlement – if you met certain criteria you had the right to a certain amount of money. Up until 2008, the Fund was not cash limited and therefore the assessment of eligibility did not include any element of rationing scarce resources. Neither were there the local variations in people’s experiences of getting help which are so much part of the local authority social care system (except, after 1993, variations in access created by local authorities’ gate-keeping role).
Research has always found that disabled people generally had positive experiences of ILF assessments and there was little evidence of the ‘social worker knows best’ type of attitude which many complain about when receiving social care assessments.
Even the 2007 Review of the ILF – used by the current government to justify its closure – highlighted the favourable experiences of assessments, and its much valued and “unusual” example of national portability. Whatever the faults of the ILF, its relationship with disabled people was different to that of social services professionals who – struggle as many do to be more empowering – are working within a culture with a long history of ‘doing unto’ people and a strong, often now overwhelming, element of gate-keeping scarce resources.
If you have an impairment and/or long-term ill health in our society you face additional costs of daily living. Currently, these additional costs are recognised partly through the social security system (DLA/PIP) and partly through social care. In its original form (between 1988 and 1993) the ILF – although set up as a discretionary trust – was part of the social security system: cash grants were delivered on the basis of entitlement, were not cash-limited, and, to begin with, it wasn’t even clear that they were means-tested. From 1993, ILF funding became a hybrid, sitting between the two systems – funded out of the social security budget but accessed once someone qualifies for a certain level of social care.
The question is: Why do we think that it’s appropriate that some additional costs are funded via a system of entitlement based to a large extent on objective criteria (imperfect though this is) and some via a system of cash-limited, professional social work judgements about what a person’s ‘needs’ are?
Now that we have a United Nations Convention covering the rights of disabled people, with the right to independent living at its heart, why do we think it’s appropriate that our assistance needs are met within a system called ‘social care’?
For years, disabled people and our allies have tried to reform social care systems so that these systems and their resources are used to deliver the building blocks to true citizenship. In the 1990s, we worked to develop understanding about the difference between a ‘needs-led assessment’ and a ‘service-led assessment’. In vain we struggled to stop social care assessments being about rationing, about fitting people into existing services. Then we thought that direct payments would deliver choice and control, yet once implemented they were subject to such bureaucratic monitoring and restrictions on how they could be used that the original vision was all too often impossible. During the 2000s, we thought that personal budgets, Resource Allocation Systems, service brokerage, self-directed support could all transform social care into an empowering mechanism for delivering independent living.
Most developments in social care over the last 30 years have been driven by people who are very committed to empowering the people for whom they provide services. There are many individuals who I admire for their dogged determination to keep trying to bring about a real transformation in the system and in people’s lives – and some things have changed for the better and many individuals have benefitted.
But progress has been very limited, has arguably stalled in the current climate, and – in any case – can ‘social care’ really deliver a right to independent living?
When I was working on Improving the Life Chances of Disabled People – the Labour Government’s 25-year strategy for delivering full citizenship for disabled people - we identified the following characteristics as necessary for delivering independent living:
- a single system which would address all aspects of disabled people’s needs for support and/or equipment or adaptations
- choice and control over the resources allocated
- self-assessment to be a key part of the process of determining eligibility, acknowledging disabled people’s expertise in how to best meet their needs
- access to advocacy where this is needed.
Disabled people have long argued against the fragmentation of our lives across different budgets and services. We have argued that we have the expertise about how best to meet our needs for additional support so that we can go about our daily lives. The Right to Control – an attempt by the last government to bring together six different funding streams – was just one example of how this could be done. Disability Rights UK has recently recommended that employment support funding should be put in the hands of disabled people themselves, rather than the myriad of contractors and sub-contractors who have such a poor record of success. Neil Crowther’s argument that we need something like an Access to Living fund which brings together all the different sources of funding daily living costs is just the most recent example of an idea which goes back 30 years or more.
It is no coincidence that disabled people were prepared to fight to preserve the Independent Living Fund. It is no coincidence that the ILF has been particularly effective at enabling people with high support needs – including people with significant learning disabilities who otherwise end up in institutional care – to live in their own homes. Far from abolishing the ILF we need a system which builds on the way it has enabled thousands to lead ‘ordinary lives’. We need a system which funds the additional costs that disabled people have – of all ages, and across the whole range of impairments and long-term health conditions. It needs to be a nationally consistent system, with no element of post-code lottery. And it needs to be based on universalist principles, like child benefit and DLA/PIP are. Universal payments, unlike means-testing, are the most efficient way of delivering support, having lower administration costs and creating no disincentive to employment or to increase wages and hours of work. What is more, by recognising additional costs they help reduce poverty and inequality.
Critics may say this is unrealistic – particularly in the current context. I would say that those disabled people who were willing to go to court to defend their right to independent living have shown us that we need something worth fighting for – and the current tinkering with the social care system is not it. Building on what is good about the Independent Living Fund gives us many more opportunities for working towards the goal of implementing, in full, the vision of independent living that disabled people have been fighting for over the last 30 years.