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Fulfilling Potential

ecdp response, March 2012 Part 1/4: Preamble


This document forms part one of four of ecdps response to the Office for Disability Issues Fulfilling Potential discussion. This preamble outlines ecdps take on the context within which the Fulfilling Potential discussion is taking and our Wider vision to enhance the everyday lives of disabled people. All four parts of the report are available on the ecdp website: www.ecdp.co.uk. For further information on any element of these documents, please contact Rich Watts (Director of Policy & Development, ecdp) on rwatts@ecdp.co.uk or 01245 392 324.

SECTION 1: PREAMBLE
Sections 2 and 3 of our response correspond more directly to the questions posed in Fulfilling Potential. We are using the opportunity afforded by the discussion paper, however, to set out in this Preamble our take on the current disability picture and a positive vision for the contribution disabled people can make to society. We therefore hope this Preamble places our response in the wider context of our vision to enhance the everyday lives of disabled people and what this means in practice. Specifically, in To what end? below, we set out our answer to the question of what will be enough to achieve disability equality. Before that, we reflect on the progress that has been made over the last generation in working towards disability equality.

Life chances of disabled people


Though there have been many major developments in the drive for disability equality through the 1970s/80s with the advent of Centres for Independent Living, and then from 1995 onwards with the introduction of the Disability Discrimination Act and subsequent legislation disabled people remain amongst the most disadvantaged in society. Some key statistics suggest that the wider change in society that was hoped would flow from a good legislative base have not yet been realised. The employment rate of disabled people increased from 43% in 1997 to 44.5% in 2005 to 48.4% in 2008. However, though the gap compared to the overall employment rate has narrowed from 35.6% in 2005 to 31.2% in 2008, the majority of disabled people are not in employment. Furthermore, the average gross hourly pay for disabled employees is 11.08 compared to 12.30 for non-disabled employees. In education, 23% of disabled people have no qualifications compared to 9% of non-disabled people. There has been a slight increase in the percentage of learners with a learning disability participating in Further Education, from 10.5% of all learners in 2005/06 to 11.6% in 2006/07 and 11.9% in 2007/08, but significant issues relating to disability and education remain. In social care arguably the focus of most policy relating to disabled (and older) people since 2007 Direct Payments were only made to 6.5% of all people using services some 115,000 adults Fulfilling Potential ecdp response, March 2012 Part 1/4 : Preamble Page 1 of 7

aged over 18 (2008/09). (This figure includes 29,000 carers, who represent approximately 25% of all DP users.) In volunteering, disabled people are significantly less likely to engage in formal volunteering than non-disabled people: some 21% of disabled people volunteered in 2008 (a decrease from 23% in 2001) compared to 27% of non-disabled people in 2008 (itself a decrease from 28% in 2001). Nearly half of all adults who have never used the internet are disabled people. In December 2011, 8.2m adults some 16% of the UKs adult population had never used the internet. Of these, 3.98m were disabled people. This represents 49% of all those who had never used the internet and 35% of all disabled adults. But there are some silver linings. For example, figures from 2008/09 show that disabled people are significantly more likely to have participated in civic lifei than non-disabled people. In 2008/09, 42% of disabled people participated in civic life compared to 37% of non-disabled people. Given current policy drivers, this is encouraging.

The disability rights framework


The disability rights framework that now exists has undoubtedly been a significant success for the disability movement. After the introduction of the Disability Discrimination Act in 1995 though by no means perfect legislation (with gaps in its coverage, weak protection, and inadequate enforcement provisions) there followed more significant legislative progress with a further Disability Discrimination Act (2005) and the Equality Act (2010), the Direct Payments Act (1996) and the Special Educational Needs and Disability Act (2001). Furthermore, in 2007 the UK was a signatory to the UN Convention on the Rights of Persons with Disabilities [sic] and ratified it in June 2009 (with some opt-outs). The overall effect of this legislative framework was one that moved from negative compliance with the law to the positive duty to promote equality for disabled people. Informing and emanating from this framework were significant structural advances through, for example, the Disability Rights Task Force (1997-1999), the creation of the Disability Rights Commission (1999-2007) (since becoming the Equality & Human Rights Commission, with its attendant Disability Committee) and the establishment of the cross-government Office for Disability Issues in 2005. And at least two significant policy drivers contributed to this period through the publication of the Strategy Units Improving the Life Chances of Disabled People Report (2005), which gave rise to the Independent Living Review (2006-2008) and the subsequent publication of the Independent Living Strategy (2008). The positive trend continues to this day in some major areas of policy, with Fulfilling Potential itself, the SEN Green Paper, continuing personalisation in social care and its wider roll-out in health. Nevertheless, though a comprehensive disability rights and policy framework has been established over the last generation, this by itself hasn't been enough to transform disabled people's life chances. The question becomes: what will be enough? There is disagreement within the disability movement about what outcome is wanted, let alone what is required to get there. ecdp is therefore using the opportunity of Fulfilling Potential to set out some of what we think should be both the outcomes to be achieved for disabled people and the means by which they will be delivered.

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In doing so, we aim to look beyond the current economic circumstances whilst being mindful of their current effects. We hope and expect that Fulfilling Potential will lay foundations for 50 years time, not 5 years.

Means: working in partnership and across boundaries

The disability movement must continue to have the relevance and success that has led to the changes of the last 30 years.

We feel there is limited awareness that the field of disability has been a major driver and innovator when it comes to public service reform. To take just one example: Direct Payments and personalisation are the direct results of work done by disabled people and their organisations that has led to significant swathes of public service reform. The Right to Control is literally Trailblazing a similar path. Such changes as are happening to public services now including the continued transformation of adult social care, health reform, the shift in power to the most local level possible, and creating a partnership between the individual and the state rather than the state doing everyone on behalf of an individual are ones that disabled people should again fundamentally contribute to and drive. For this to happen, the disability movement should broaden its horizon to think not just about disability questions by themselves but to contribute to national debates and developments forging strategic alliances with relevant organisations, becoming expert advisers and partners to a range of other sectors, including (but not limited to) government at a central and local level. This builds on the notion that the disability movement alone cant secure the reform or redistribution needed to promulgate disability equality in the wider public sector and society as a whole. It suggests the disability movement cant afford to operate in a disability silo nor afford time to retreat back to theoretical questions of 'identity' alone if it is to be successful in meeting the challenges ahead.

Means: an all or nothing Campaigning approach?

Campaigning clearly has its place in a democratic society. We sometimes wonder whether the way in which this Campaigning (note big C) happens is useful.

Let us take two very difficult, but very current and controversial examples of present or potential government policy: welfare reform and assisted dying. What is clear in both of these cases is that, if the disability movement takes a purely oppositionalist and adversarial approach to these intentions especially when accompanied by no alternative solution other than the status quo then the final result is likely to be much worse overall for disabled people. Instead whilst recognising the broad direction of travel we need to work with legislators and officials to enable them to understand the impact such policies would have on disabled people and support them to mitigate or minimise these effects.

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As such, we advocate that it cannot be an all or nothing approach to promoting disability equality but one in which we, as disabled people and disabled peoples organisations, must work in partnership with other organisations (including at all levels of government) to achieve better outcomes for everyone, including disabled people.

To what end?

Even if the means of Campaigning, for example, were right, what about the ends that such an approach seeks to achieve?

Contemporary views of the modern welfare state are illustrative. Such views often appear or are contradictory, as captured by a well-known disability campaigner: It is perhaps ironic that many of us spent the 1970s criticising the welfare state, only to find that these arguments were built upon and taken much further by a government determined to reduce state expenditure. Consequently we spent the 1980s defending what we had previously attacked. In sum, we defended the indefensible[.]ii Similarly, some people argue that disabled people should be left alone by the state when it comes to reforms, calling upon issues of sickness or vulnerability by way of justification. To take one manifestation of this: regarding employment, some people ask that whole groups of disabled people are deemed de facto unfit to work because of their impairment or long-term health condition the sort of a priori judgment that would rightly be considered discrimination. Such views from our perspective contribute to a lingering sense of disabled people as recipients of charity, or people who should be left alone and looked after / protected by the state. They dont tally with ecdps views of the sort of society disabled people should be an equal part of; nor do they tally with prevailing views in the ways issues like disability hate crime, for example, are being successfully addressed. Thus, to answer our own question: what will be enough? We believe government should operate, and all citizens be encouraged to behave, such that disabled people have the support required and same access to opportunities as non-disabled people to participate fully as equal citizens. A fundamental building block of this is an enabling state one which isnt just a safety net, but one that provides a positive platform for disabled people to achieve their greater goals. This requires a welfare state, in the broadest sense of the term welfare. Jenny Morris has put it most eloquently, most recently, building on a history of such thinking in the disability movement: In order to experience equal access to full citizenship, disabled people therefore require some kind of collective and redistributive mechanism to provide the additional requirements needed. Moreover, such redistribution needs to be in the context of a value system which values diversity and where disabled people are treated as belonging and contributing to the communities in which they live.iii

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For us, such an enabling state would have the following sorts of characteristics: It must be recognised that the state isnt just about questions of welfare benefits, or social care entitlements, or free transport passes or blue badges. It is about providing an equal platform for disabled people to make their own contribution We wish for a system whether in principle or in practice in which all different entitlements and support are drawn together around the individual. Fulfilling Potential is an opportunity to look at an individual first and to see how all of the different and complex systems (and their associated bureaucracies) interact to make things happen or get in the way. We wish for the opportunity to take Right to Control to its logical conclusion across all public provision Such a system would be coproduced: its design would be done with disabled people, decisions made about it done with disabled people, its delivery would be done with and through disabled people, and its review would be carried out with disabled people. Such an enabling state would be one that works in partnership with an individual, rather than does things unto them. To do this, it must: Recognise disabled people are experts in their own lives Offer as much choice and control as possible to disabled people at as many junctures as possible Recognise, develop and utilise the capabilities of disabled people. Disabled Peoples User-Led Organisations (like ecdp) clearly have a role to play in such an enabling state. We have set out what we think that role is, and how we think it can be delivered, in our substantial answer to question 11 in Section 3. Section 2, however, shares the views and lived experiences of our members and disabled people across Essex, who have identified ways in which the current system does and doesnt work, and suggested what the enabling state could look like, and ways that it can be achieved.

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Here civic life includes undertaking at least one of the following activities in the previous 12 months: contact a councillor, local official, government official or MP; attending public meeting or rally; taking part in demonstration or signing petition. ii Mike Oliver Speaking out: disabled people and state welfare 1991, quoted by Neil Crowther: http://www.neilcrowtherconsulting.com/blog.php iii Jenny Morris: Rethinking Disability Policy, November 2011: http://www.jrf.org.uk/publications/rethinking-disabilitypolicy

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