Is it time for timidity or for ambition on support for younger disabled people?

It’s 13 years since the UK government adopted the promotion of independent living as official policy and committed to developing an system of integrated individual budgets, underpinned by support for a national network of disabled people’s user led organisations (DPULOs).  The Prime Minister’s Strategy Unit report ‘Improving the Life Chances of Disabled People said:

‘While Direct Payments have delivered significant choice and control for some people, they are not suitable for everyone. Moreover, the fragmentation of people’s needs across different budgets means that Direct Payments are not always sufficient to deliver a personalised and holistic response to individuals’ needs.

This report therefore proposes that different sources of funding should be brought together in the form of individual budgets – while giving individuals the choice whether to take these budgets as cash or as services.’

The intervening years have been punctuated by developments such as the Right to Control, Personal Health Budgets, Putting People First, the Care Act 2014, personal budgets the context of disabled children and families and nods to personal budgets in relation to employment support. Nevertheless, the lack of a shared ethical and legal underpinning, or of policy coordination and integration across these schemes means that they are failing to deliver the promise of individual budgets to secure wraparound support for living a life, as articulated by the Life Chances report. In maintaining the fragmentation of traditional services, they have also failed to disrupt value chains or unpick deeply embedded professional and institutional cultures of control. The choice and control architecture envisaged by the Life Chances report (DPULOs) has not enjoyed the government support that the report advocated, meaning that inequalities in the capacities and resources of different people to navigate the market to secure their needs are often unaddressed and unsupported. Implementation of all of these schemes has struggled against the floodwaters of austerity, coming on top of long-term underinvestment in relation to adult social care in particular. Austerity has not only led to a reduction in the quantum of support available, but in the willingness of public authorities to let go of control. More recently, a resurgent Left has begun noisily to frame personalisation as an arm of neoliberalism, designed only to shrink the State by a thousand cuts. The Labour Party’s official position is uncertain: not vocally opposed, but no longer an enthusiastic advocate. With a clear agenda of ‘bringing public services back into public ownership’ it is unclear what its approach to giving disabled people choice and control would be.

Political realities may therefore mean that the disjointed and incremental journey of personal budgets is all we can hope for, and that one day there may be a confluence sufficient to bring us closer to the idea originally mooted in the Life Chances report. We might get there eventually. But we also might not….

Meanwhile, Australia has developed a national scheme of integrated support for working age disabled people, co-funded by national and regional government with the explicit aim of realising Australia’s obligations under the UN Convention on the Rights of Persons with Disabilities and the other human rights treaties to which Australia is Party, under the banner “Every Australian Counts.” The scheme involves a significant uplift in expenditure on supports.

While there are problems with implementation of the National Disability Insurance Scheme of a kind that will be all too familiar to disability rights advocates in the UK, it is nevertheless galling that the country has in effect broadly adopted and run with the approach envisaged by the Life Chances report. But the fact that it has is also an opportunity, as for many years now UK government’s of all colours have looked to both the USA and to Australia for inspiration.

Earlier this year the then Cabinet Secretary Damien Green announced a forthcoming Green Paper on the funding of long-term care for older people, quickly rushing out a statement that a ‘parallel process’ would take place concerning funding for younger people. Many reacted negatively to this separation, suggesting it indicated only that younger people’s care and support was an afterthought. That may or may not be so, but the question now is: how do we turn this into an opportunity?

I believe the answer is to put forward a big bold idea, based on the National Disability Insurance Scheme. Let’s call it the Access to Living Scheme. As envisaged in the Life Chances report and the NDIS Act, the scheme will be explicitly rooted in the UK’s obligations to protect, promote and ensure the rights of disabled people. Rather than ‘social care’ or ‘continuing heath care’ or ‘employment support’ and so on the scheme will provide wraparound support with living a life via a scheme of integrated individual budgets. A national network of peer support platforms will receive seed funding, and can take the form of coops, social enterprises, community businesses and charities. These ‘access to living centres’ will support people to identify and articulate their own aspirations and needs, to manage their budgets, offer opportunities to pool resources and play a key role in fostering the bonding and bridging social capital that can help create more self-sustaining communities. The Access to Living Scheme will enjoy an initial uplift in investment, but this investment will within a decade lead to sustainability as the current costs of administering multiple schemes subside, productivity sharply increases and the economic participation and wellbeing of disabled people and their families shows vast improvements.   The Access to Living Scheme, will, like the NHS, come to be a source of national pride, enjoying broad support across political party lines.

We invented the idea after all. Isn’t it time to got on with it?

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