Authors of our lives February 19th 2018
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
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 under-investment 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
We invented the idea after all. Isn’t it time to got on with it?