An alternative view of eligibility – will social care ever empower people with learning disabilities?
Austerity is disproprortionately affecting disabled people which has brought them into conflict with the authorities which make decisions about eligibility for care. In this article, Colin Slasberg and Peter Beresford call for a radical re-think of the idea of eligibility.
A fundamental principle for learning disabled people and the groups who support them is that they are the experts in their own lives. The rhetoric of government suggests it agrees – it has long said it wants to give service users ‘choice and control’ and to ‘empower’ them. But this is not how it feels for most. A small minority have what it takes and are allowed to escape the system and do feel empowered – but the great majority remain trapped in a system that declaims what their needs are and how their life should be.
We recently published a paper that seeks to throw light on this contradiction (1). The source of the problem is the economic fundamentals of social care. There is a fundamental disparity between the lived experience of the needs the person cannot meet themselves, and which require public funding, and the resources the council have to meet them. The fear is that the first is much greater than the second and, with that, comes a large funding gap.
What is certainly true is that the demand for resources to meet needs is unpredictable. Two people might have identical impairments, but their needs can be completely different. The attitudes and personal resources they bring, the attitudes and personal resources of those around them, the attitudes of the communities they live in, their physical living environment, their socio-economic status are all highly variable. The infinite ways these variables can interact make each person unique.
Councils have to spend within a budget. How can this conundrum be managed?
The solution has been the long-established concept of the eligibility policy. Councils create the categories of need they will meet. The assessment process locates people within these categories to determine the level of support they will get. Their assessment of need will match – more or less – the budget. This is because the eligibility criteria are set to ensure the flow of needs is affordable within budgets.
Fitting people within categorised needs in this way is incompatible with need being unique to the person. The impact is profound. ‘Need’ as lived experience is by-passed, as is the idea that the person (or someone who knows them intimately and is able to act on their behalf) is authentically expert in their own lives. The expertise switches starkly from the person to the practitioner. The practitioner knows how the council’s eligibility policy works. The service user is disempowered and alienated from how the council views them and the decisions it makes. Instead of being seen as an expert, they are cast into the role of applicants for resources. And, crucially, any funding gap is denied.
An alternative approach
Disabled people would naturally prefer a system whereby all their needs as identified through lived experience were funded. That would require councils to work with an open financial commitment from government. Although a change worth campaigning for, it is simply not on the horizon. Change is required now.
There is a way that requires change to the way resources are allocated can be achieved. The assessment is rooted in the person’s lived experience. The council then makes decisions about which needs it can afford to meet and which it cannot. The person’s expertise is not only respected but required. The practitioner does, however, have an important role in helping to both frame and develop their thinking. But, crucially, the council’s view of their needs is not being imposed. User participation is real, not just lip service. The approach can be called a person-centred resource allocation policy.
Central and local government convey the message that the law requires there to be an eligibility policy. This is not the case. The law allows eligibility policies but does not require it. The Care Act 2014 actually makes explicit the provisions required to support a person-centred approach. However, the Government’s guidance to the Care Act has ignored this opportunity and has instead encouraged the perpetuation of the eligibility approach.
Replacing ‘eligibility’ with a person-centred resource allocation policy would make the empowerment of all disabled people possible. But there are powerful forces that support the status quo. Eligibility based thinking is decades old and deeply etched in the psyche of those who work in the system. Also, eligibility policies conceal the true cost of care. This allows political and sector leaders to bury their heads in the sand in the belief the level of resource they provide is sufficient, however meagre it might be.
A growing awareness that allocating resources through eligibility policies creates needless dependency will provide some impetus for the system to change itself. It is doubtful it will be enough. Change is more likely to come if service users and those who support them agitate for it.
Reference
- Slasberg C & Beresford P, The eligibility question: the real source of depersonalisation, Disability and Society, 31:7, 2016 http://www.tandfonline.com/doi/full/10.1080/09687599.2016.1215122.
