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What are ULOs for?
What are ULOs for?
27 November 2013

Undoubtedly, when we first were setting up our organisations in the early 80s we were responding to an extensive history of discrimination and exclusion, oppression even. Disabled people came together to question the way society treated us and to campaign for better. And in fact there weren't any formal ULOs, we set up disabled people's organisations run by, yes, disabled people and not by 'users'.

But who are disabled people? It's probably helpful to remind ourselves of some basic principles, because our ideas and analysis get misunderstood, misinterpreted and, let's face it, sometimes hijacked, so . . . .

  • many, many people in our society have impairments; that is, their bodies, minds, or senses work differently to others'
  • our society is often neither designed nor built, nor operates to accommodate our impairments, and this results in barriers to our activities.
  • it is the barriers, not the impairment which result in disability (or disadvantage, or discrimination).
  • if we tackle the barriers we can remove or minimise the disability
  • people will still have impairments and will need appropriate services and support

So, very simply, disabled people are those who have one or more impairments and who encounter barriers as they go about their daily lives, barriers that non-disabled people do not encounter. In recognition of these barriers - or disability - disabled people started to organise amongst themselves, to analyse and address the root causes of disability, and by the early eighties disabled people's organisations were spreading both locally and nationally. There was a significant growth of Coalitions and CILs, (or Centres for Independent / Integrated Living) conceived by, set up by, and run by disabled people: some areas, most notably Derbyshire, had one of each. The purposes of Coalitions were generally to campaign and influence policy whilst the CILs aimed to promote and support independent living, doing a lot of early work on housing, PA support, and direct payments: gradually they started to design and deliver services.

The growth of disabled people's organisations, or DPOs, then, can be seen as an early response to the barriers that we encounter and the policies that fail to address them.

User-led organisations (ULOs) are a much more recent development, making a 'formal' appearance in the 'Improving the Life Chances of Disabled People' report from the Prime Ministers Strategy Unit in 2005, and the Department of Health was the lead in developing recommendation 4.3 from the Life Chances report, which said that

“By 2010 each locality (defined as that area covered by a council that has social services responsibilities) should have a user-led organisation modelled on existing CILs.” Dept of Health and Office of the Deputy Prime Minister to lead.

The concept of 'service user involvement' goes back further, however, at least to the 1993 National User Involvement Project and maybe beyond, and there have been many initiatives around involving service users, across a range of services and not just for disabled people. But here was formal support for the concept of service users coming together to both influence and be involved in the delivery of services. And this can only be a good thing, can't it, because the people who receive services are the experts, the ones who know how it works out, how it feels, what can go wrong.

But of course, setting up and running a ULO is a far cry from working with others to influence the design and delivery of a service. Among the original design criteria for a ULO were the following:

  • has a clear management structure
  • has robust and rigorous systems for running a sustainable organisation (e.g. financial management/contingency planning)
  • is financially sustainable as there will be no ongoing central government funding
  • has paid employees, many of whom must reflect the organisation’s constituency

So, not only must disabled people be knowledgeable about the service(s), and about supporting and consulting with all stakeholders, they must also be entrepreneurs and business people! And of course there are ULOs that do all this and more, so what concerns can there be?

Well, firstly, not all disabled people are 'users', not currently anyway although they may be potential users, or they may have been excluded from being a service user by eligibility criteria even though they 'qualified' previously. This means that a large percentage of the disabled population is not technically covered by a ULO, and is not qualified to be involved in the running of a ULO. Whether or not this is an important issue remains to be seen. Does this matter? Well yes, we think it does. The reasons for setting up organisations are crucial to the design and operation of that organisation, to its membership and therefore its sustainability: if there is confusion or ambiguity then this can lead to problems in governance and management.

Related to this is the fact that a 'User-Led Organisation' necessarily defines those who use its services. Technically, if you are excluded from services by the FACS criteria, or indeed by a financial assessment, then you do not 'qualify' to be part of a ULO. This logically defines what can be influenced, unless there has been some creative commissioning and unfortunately this is not common.

And what of the non-users, or 'self funders' as they are quaintly called: where is the consultation with them, and how do they influence what is available other than 'voting with their feet'? Studies have shown that self-funders struggle to get advice, information and support: see, for example,

And although there is not the space in this piece to address it, what about the 'managed market', which is surely an issue for all service users, regardless of how the service is funded?

Secondly, not everyone is an entrepreneur or business-person, disabled people included: the skills needed to set up and run a business are considerable and it's no wonder if, in efforts to be 'sustainable' (as required by the criteria) the original focus suffers.

Furthermore, if you are to successfully run a ULO you need to generate business and compete for contracts, often in competition with much bigger and more experienced bidders. And the matter of influencing the design of services - and therefore contracts for which you may be bidding - and whether this necessarily excludes you from the contracting rounds has not been adequately addressed. So, the very business of setting up, developing and maintaining a business can make it hard to also address the core rationale for disabled people's organisations.

Thirdly, an important reason for disabled people having our own organisations is to do with influencing policy and practice. As noted above, DPOs were set up to do precisely this, though we may have expressed it differently. However, getting the balance right, in one organisation, between providing both the services and the challenge is difficult. There is an inevitable tension in seeming to 'bite the hand that feeds you' and many ULOs are, rightly, nervous of challenging a major funder. Inevitably this means that there may be a lack of adequate challenge because of this nervousness. If a ULO exists mainly to provide services, as well as to consult and work in 'partnership', then where is this necessary challenge to come from?

At the end of the day, is a ULO just a business, albeit with a strict set of criteria that apply to no other business in the country, and with a defined customer base? And if a ULO is a specific business, then where are the organisations through which disabled people can provide a challenge, what kind of organisations are they?

For those who cut their teeth on disability politics in the early eighties the current landscape, with social media networks developing and partnerships emerging rapidly it can seem as though there is a strong move towards individualism, with networks of very knowledgeable and capable people forming and shifting in relation to events, and the notion of a campaigning membership-based group with a committee and an AGM begins to seem a little quaint.

So, we have our ULOs, providing services, bidding for contracts, working in partnership. And we have our networks, campaigning, mobilising the tech-savvy, challenging - recently very successfully around ILF. But surely there's a gap, locally and nationally. And that's around lobbying and campaigning organisations, with accessible membership structures and an accountable structure, which provide space where we have discussions: open, transparent, inclusive spaces that can, themselves, be challenged by disabled people. Or is that, in itself, becoming a rather quaint idea? The time is right, perhaps, for those running DPOs and ULOs to be asking ourselves what, exactly, our organisations are for.

UK Disabled people's 'Reclaiming Our Futures' Manifesto
UK Disabled people's 'Reclaiming Our Futures' Manifesto
9 October 2013

Over the last two years at Breakthrough we have watched, with both admiration and some curiosity, the developing debate and activities around challenging austerity and the cuts directed at welfare and services for disabled, and ill, people. We were puzzled in part by the apparent reversal of the position of some in the disabled people's movement towards Remploy, whose abolition we always supported, believing segregated employment to work against disabled people's best interests. We have, admittedly, been slow to make best use of social media and are learning from the skills of those who make effective use of it as a lobbying and campaigning tool. Some of the activities, reports and campaigns of the people, networks and organisations emerging to lead this campaigning have been impressive, both in their content, and their distribution and targeting via social media. A new and exciting model of the self-organisation of disabled people is emerging.

Breakthrough recently posted a blog asking 'Is there a disabled people's movement?'[1] and outlining recent events leading to the development of the Disabled People's Manifesto by four of the leading active disabled people's organisations[2] [3]. The Manifesto was put out by its authors for consultation in July, for a little under four weeks, and was officially launched at an event in Parliament on 4th September as part of the DPAC (Disabled People Against the Cuts) ‘Reclaiming Our Futures’ Week of Action.

The authors of the Manifesto describe it as mapping "the key principles, demands and commitments that disabled people, our organisations and our allies can use in our campaigning and lobbying.”, and acknowledge that it is still being developed in the lead up to the 2015 General Election.

Prior to, and at the launch, people and organisations were invited to sign up to the Manifesto, and Breakthrough has been considering how we should respond. On the plus side, we find much to support and agree with in the Manifesto, but conversely there are matters we would be concerned about and wish to discuss more widely, hence this piece.

In our discussions, and our own consultations, we have been clear that our intention is not to create tensions and rifts, rather to contribute and strengthen. We hope that our discourse is seen as constructive and creative, and are excited at the prospect of a developing Manifesto that we can sign up to and get behind.

In deciding how to respond to the Manifesto we saw it as important to place it in an historical context, however briefly: in terms of self-organisation we felt two documents were seminal - the UPIAS Fundamental Principles of Disability[4] and the Derbyshire Coalition "Seven Needs for Independent Living".[5]

It is worth considering if and how the Manifesto could be strengthened by borrowing and echoing some of the core UPIAS Principles. For example, the following is an extract from the Fundamental Principles:

"In our view, it is society which disables physically impaired people. Disability is something imposed on top of our impairments, by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group in society. It follows from this analysis that having low incomes, for example, is only one aspect of our oppression. It is a consequence of our isolation and segregation, in every area of life, such as education, work, mobility, housing, etc. Poverty is one symptom of our oppression, but it is not the cause. For us as disabled people it is absolutely vital that we get this question of the cause of disability quite straight, because on the answer depends the crucial matter of where we direct our main energies in the struggle for change. We shall clearly get nowhere if our efforts are chiefly directed not at the cause of our oppression, but instead at one of the symptoms."[6]

This paragraph echoes one of our concerns regarding the Manifesto - namely that of a decided and up-front focus on welfare. Although timely, we believe that to make welfare provision a central plank of the Manifesto is tactically unhelpful. We are not saying that the welfare debate is unimportant, nor that current campaigning and lobbying is not needed. We are saying that it needs to be addressed in a wider framework, as in the Fundamental Principles and in a clear relationship to other issues.

Our view on the call for a 'disability income' is similar. UPIAS was critical on the calls for a 'disability income', not because they were opposed to the notion as such, but because as a focused campaign that did not sit in a wider framework it diverted attention away from the need to address the causes of disability.

Vic Finkelstein, discussing the Fundamental Principles, insisted that there is no disagreement on getting an income, but "it's how one's going to get there that's the fundamental issue"[7]

"We as a Union have drawn the necessary lesson from this experience in DIG, and therefore our Union's Aims and Policy Statement place incomes firmly in the context of the wider struggle for us to participate fully in society, and so achieve our emancipation from all aspects of our oppression, including poverty.”[8]

The Seven Needs for Independent Living were outlined in the 1980s by the then Derbyshire Coalition of Disabled People and provide a framework of what early analysts believed was needed in order that disabled people might achieve independence. These seven needs were later expanded into the 12 Pillars of Independent Living, which have been adopted by many disabled people's organisations[9] (see Appendix for both frameworks).

The 12 Pillars differ in that they include an adequate income, availability of inclusive education and training, and equal opportunities for employment. The architects of the 7 needs argued that if the 7 needs were met, then these extra three would follow: many disagree, and perhaps the developing Manifesto would be a vehicle to drive this debate forward, especially the 'demand' in the Manifesto for an employment quota.

It is worth noting also that the 7 needs were itemised in a particular order, each need seen as having to be in place so that the full benefit of the other needs could be realised. We feel that the Manifesto could benefit from such an approach - not a hierarchy as such, rather a clearer ordering that begins with the fundamental building blocks and then adds on the related issues.

If the Manifesto is to be used as a strategic document and as a blueprint for lobbying / campaigning we feel that a 'horses for courses' approach would be useful. For example, if this is to be used to persuade 'conservative' (non-political) politicians and civil servants to change policies and practices it needs to speak in language they will understand and not reject, whilst still getting its essential message across. The Manifesto needs some adjustment if this is to happen. Breakthrough, for example, has experience of working with politicians and civil servants in this manner - our responses to, and work on, the Improving the Life Chances of Disabled People[10] strategy were highly influential. The lessons from this have stood us in good stead for influencing the changes we see need to happen and given us an open door to push on.

Finally, we would be interested in how many people and organisations have signed up to the Manifesto so far: our 'straw poll' tells us that some significant organisations are still considering how to respond, whilst some have signed up.

We welcome the fact that the Manifesto is seen as a 'developing document' and look forward to contributing to that development.


(i) Extract from Fundamental Principles of Disability re UPIAS / Disability Alliance meeting

1. Fundamental principles to which we are both in agreement: disability is a situation, caused by social conditions, which requires for its elimination, (a) that no one aspect such as incomes, mobility or institutions is treated in isolation, (b) that disabled people should, with the advice and help of others, assume control over their own lives, and (c) that professionals, experts and others who seek to help must be committed to promoting such control by disabled people (page 5)

(ii) The Seven Needs for Independent Living

(This wording from the Disability Derbyshire Coalition for Inclusive Living)

Before we can make any decisions or changes in our lives, we need information.

Peer Support/Counselling
When we have the information we need in the format we need, we have to use it. Peer counselling can give us the confidence to use information to make changes that we want to make in our lives.

A property that can be adapted to suit your needs.

Technical Aids
Things that make everyday tasks easier to do.

Personal Assistance
Staying in control of your daily living with support from a Personal Assistant.

Public transport, community transport and individual transport which promotes independence.

Making full independent use of public buildings and the countryside.

(iii) The 12 Pillars of Independent Living

(This wording from Disability Wales)

To further clarify what Independent Living means in practice, the disabled people's movement has identified a range of issues that need to be worked on and improved to make Independent Living a reality. These "12 Pillars of Independent Living" are:

  • Appropriate and accessible information
  • An adequate income
  • Appropriate and accessible health and social care provision
  • A fully accessible transport system
  • Full access to the environment
  • Adequate provision of technical aids and equipment
  • Availability of accessible and adapted housing
  • Adequate provision of personal assistance
  • Availability of inclusive education and training
  • Equal opportunities for employment
  • Availability of independent advocacy and self-advocacy
  • Availability of peer counselling

Under each of the 12 Pillars there are a wide range of practical solutions to facilitate Independent Living, disability equality and social inclusion. However, we need to organise and work for political change if these goals are to be achieved.

[1] Our blog ‘Is there a disabled people’s movement?’ is at:

[2] See the manifesto here:

[3] The 4 organisations are DPAC, ALLFIE, Inclusion London, & Equal Lives

[4] UPIAS Fundamental Principles of Disability:

[5] Derbyshire Coalition 7 Needs for Independent Living: and listed in full in the appendix.

[6] Fundamental Principles of Disability, page 4.

[7] Fundamental Principles of Disability, page 8.

[8] Fundamental Principles of Disability, page 5.

[9]See for example the Disability Wales website (listed in full in the appendix)

[10] The Life Chances report is archived here:

Is there a disabled people's movement today?
Is there a disabled people's movement today?
23 August 2013

But what is a movement? Broadly it can be defined as a series of organised activities by a group of people with a similar ideology, or set of ideas, working concertedly toward some goal, or an organisation consisting of those active in this way. Do disabled people have this today? Indeed, did we ever have it? And does it matter?

I would argue that we did have it, and it does matter, and that for a period it was strong and effective and resulted in lots of achievements for disabled people in this country. There was also lots that the movement failed to achieve - sustainability, for one thing - but that's a different piece. Is there a disabled people's movement now? If there is how is it responding to the current social and political environment we find ourselves in?

We have economic turmoil, being addressed through austerity, and political change as the state is steadily dismantled. Both these matters are having a tremendous impact on disabled people both individually, and on our increasing struggles to grow and maintain our organisations, many of which are struggling financially or have lost funding and are running on goodwill. More and more our organisations have to work 'in partnership' - a mixed blessing at times, or chase contracts to deliver services not designed by us, and bidding in competition with much bigger players. The Office for Disability Issues (ODI) is supporting our development by 'encouraging strong and sustainable Disabled People's User Led Organisations' but setting the goalposts to a certain extent by defining us as 'users' rather than citizens.

What impact does all this have on our organisations? There is an inevitable focus on service delivery, which in itself is not necessarily a 'bad thing', but this can lead to the exclusion of 'politics' and a loss of 'thinking' on disability. It can also lead to insularity in that other organisations become, or see themselves as, competitors, and can lead to a lack of common understanding, and therefore of clarity of purpose, with many different people and organisations taking different approaches to tackling the issues which disable us.

All of these factors, unintentionally perhaps, have the effect of restricting what organisations can say and do, indeed of 'taming' them. Certainly, there is little scope for old fashioned capacity building, let alone campaigning, by organisations. And goodness, 'fairness' has replaced anti-discrimination. How are we to respond to these developments? Did we really 'take our eye off the ball', as said of the '80's groups' by current activists last year?

Meanwhile the big charities, who we loved to hate back in the eighties, have redefined and rehabilitated themselves, declaring that they are now part of the 'disability movement' and even, some of them, user-led. They have adopted social model language but have they really changed? Or is it a case of the Emperor's New Clothes? Take the fact that Scope hosts the 'Britain Cares' website, promoting 'social care' (a concept we don't question enough) yet owns 45 care homes: how are these compatible? And is 'care' really part of the route to citizenship and independence?

Undoubtedly one of, if not the biggest threats to disabled people today is the reduction of support through the coalition government's welfare reform programme - a clear and present danger, if ever there was one - and estimated in the disabled people's draft Manifesto[1] at a loss of £28 billion from the welfare budget.

And understandably, and probably thankfully, a movement has grown to track, and to challenge, these benefit changes, making very effective use of social media and building networks across a wide variety of players, and achieving a fair measure of success in political lobbying, in exposing poor, even mendacious practice, and in mobilising 'sick and disabled' people around austerity and cuts.

But does this constitute a disabled people's movement? (Note that I do not say a 'disability movement' as this is a nonsense, like saying a sexism movement rather than a women's movement. But that's yet another piece.) Some have expressed the view that the idea of a collective movement is no longer possible. Attitudes have hardened and activism is around individual interests, rather than social justice more broadly.

There certainly exists a 'series of organised activities by a group of people with a similar ideology, working concertedly toward some goal' and there are a few organisations 'consisting of those active in this way', such as Disabled People Against the Cuts (DPAC) and 'the Broken of Britain'. Along with other like-minded organisations they are successfully building networks and using social media to get their message across, targeting austerity and welfare reform at a strategic level.

DPAC and 3 other disabled people's organisations have produced the 'disabled people's draft manifesto' which is a detailed document setting out a list of 'demands' and is intended to form a central focus for lobbying in advance of the next general election.

But do these constitute a movement? Essentially this debate is reminiscent of the discussions between early UPIAS[2] and Disability Alliance members in the 70s which led to the production of the 'Fundamental Principles of Disability'[3] which explained that our exclusion from society was not just about an income. And indeed the current proposed Manifesto is not just about welfare and austerity, but it is strongly framed by those matters rather than leading on Rights and Principles of independent living. It would be unfortunate if this document proved to be divisive, addressing only certain sections of the community of disabled people, rather than providing a core set of beliefs and principles which can be used to mobilise disabled people back together.

Because that's what's missing here. If you experience discrimination but are not dependent on benefits, if you're not practised on social media, if you've been working quietly and locally in the background, and if you're unwilling to identify as vulnerable or broken, well it can be hard to see where you might fit.

At Breakthrough we have discussed whether, as an older and relatively well established organisation, we have been somehow at fault, feeling that it had been suggested, as pointed out earlier, that we were 'taking our eye off the ball' and focussing on service delivery to make money. This was an unfortunate event on two counts: firstly, it misunderstood that Breakthrough was specifically set up by disabled people, for disabled people to deliver services and we added policy work gradually. Secondly, the suggestion that we had taken our eye off the ball was perceived by ourselves, and others present, as an unhelpful approach which then made it hard for our representatives to feel included. We use this example to illustrate that building a movement requires a reaching out to all sections of the community, even when that may prove difficult or problematic.

As we said, the welfare reform agenda is a 'clear and present danger' for disabled people, and the campaign to challenge the cuts is necessary and is proving a vehicle to mobilise disabled people. However, the focus on benefits can lead to lack of attention to wider issues such as transport, accessible environments, education, and so on. It's not that these matters are not being addressed, rather that they're not unified in a national framework that takes all disabled people into account.

So what are we disabled people and our organisations doing? Chasing resources, very often, but trying for that not to be our focus. Many organisations are contracting with local authorities, the NHS, and other statutory bodies, trying to marry up their agendas with our own and, at best, delivering peer-designed services. Many are also lobbying and/or responding to consultations in terms of attempting to influence policy and practice both locally and nationally. Others, such as ourselves, are compiling and disseminating information[4], or providing advice and support to disabled people. And - often almost as a by-product - bringing disabled people together to share experiences and learn from each other.

And what about our national organisations? The UK Disabled People's Council (UKDPC) has recently lost its funding and those involved continuing as volunteers, but it has not been regarded as a powerful player for some while. Disability Rights UK (DRUK) one year on from the merger which formed it, is often seen as too close to government and rather 'establishment. There are also many impairment-specific organisations, not all of which are user-led, generally providing services to a small section of the community of disabled people.

What are our organisations, local and national, NOT doing? (not enough, anyway). They're not talking and working together; they're not analysing, politicking, developing others, developing solidarity and reaching out to other communities of disabled people, challenging the status quo.

What are the challenges here? There's a danger of rifts, difficult rifts making consensus hard to reach. The lack of a commonly agreed analysis - though goodness knows it's there for the taking - may lead to reactive politics which can be ineffective and lack strategic direction. And there's a danger that we don't learn from history - as in the UPIAS / Alliance debate.

The benefits lobby is strong, knowledgeable, committed and organised, a good example of collaborative working and the current strong focus on the benefits / cuts agenda, the lobbying & campaigning on these matters is timely and necessary, but it isn't happening as part of an overall structure that is framed by rights and citizenship, and which operates in such a way as to bring together people from all corners of the community of disabled people. And more's the pity.

So is there a movement? A welfare reform movement? Maybe.

But a disabled people's movement? Probably not: not yet.

But maybe it's imminent?


[2] The Union of the Physically Impaired Against Segregation:



The Right to Choose
The Right to Choose
10 July 2013

The Work Programme is, rightly, receiving much attention lately as performance figures are published, indicating a disappointing rate of success with disabled claimants[1], with less than 3% of people in receipt of Employment Support Allowance having secured at least three months paid work since the scheme began in June 2011. What we’re not seeing much of, though, is information about the ‘Right to Control’ and how it is delivering better employment outcomes for disabled people in Greater Manchester by giving them the choice and control over employment support available to them through the Work Choice offer. Let’s put that right.

In December 2010 the government launched the Right to Control (RtC) initiative, designed to give disabled people - for the first time ever - a legal right to be in control of a range of services and to receive and 'pool' the budgets to pay for those services. The services include Disabled Facilities Grant, Access to Work, Work Choice, Supporting People and the Independent Living Fund, as well as community care services.

The Manchester Area Partnership (MAP) Right to Control was launched in April 2011, later than the others because of the size and complexity of the project: it included five local authority areas in Greater Manchester, although this is now four since one withdrew. As well as being a strategic partner in the MAP, Breakthrough (B-UK) was closely involved in the initial MAP bid and presentation to the Office for Disability Issues (ODI), and indeed has had a place on the National RtC Advisory Group throughout. B-UK also hosted the MAP Centre for Independent Living, a key deliverer of the RtC and so we have been a key component in this development.

The seven RtC pilots are currently waiting with bated breath for a Ministerial decision on whether to 'roll out' RtC, or to let it end when the pilots are finished in December 2013 and despite the evaluation doubting the ‘added value’ of RtC disabled peoples’ organisations such as B-UK have been firmly in favour from the start.

That's the top layer of the RtC story, but there are many back stories that are interesting, intriguing even. This article is about employment support in the MAP - Breakthrough's bread and butter, as it were. Now, it's fair to say that RtC has struggled to include employment support in its offering - despite, it seems, everyone's best efforts and hard work to coordinate services.

But over the last six to eight months we've been heartened by the increased number of disabled people coming forward and being referred to our employment services through RtC, currently numbering 90 individuals. Why is this happening, so tantalisingly close to the projected end of the pilot? This is a question that is hard to answer definitively without robust evaluation, but we do have some ideas and some of them reflect thoughts arising from reviews of RtC that have already been carried out whilst others reflect thoughts that we've had from the very start.

Three major issues that have been recognised across all RtC Trailblazers are bureaucracy, communication, and culture change. RtC attempts to bring together national and local bodies, a wide range of different support programmes with their own systems and criteria, and staff and clients with differing expectations and experiences. Moreover, the MAP RtC Trailblazer brought together five very different local authorities. On top of this RtC is built on coproduction, that is, disabled people and their organisations were to be involved in designing and delivering the pilots. Perhaps we all were naive not to realise the difficulties these matters would generate, and not to anticipate the time it would take for work on these issues to start to bear fruit.

Let's look, though, at what's actually happening: last summer we began to see an increase in referrals from the Jobcentre Plus (JC+) Disability Employment Advisors (DEAs). Although at B-UK we had done a lot of outreach since RtC started, both with JC+ staff and disabled people, referrals for employment support had not really materialised. However, finally our networking with DEAs began to bear fruit and they started referring people to our service - people who then reported back to the DEAs what a difference they were finding and how helpful and useful the service was, with a higher level of engagement than they had found with other providers.

From September 2012 to date we have had 90 referrals from DEAs of deaf and disabled people wanting employment support through RtC, and to date there have been 7 people placed in paid work - all in the last quarter but an overall success rate of 7.7%, more than double the 3% of disabled people claiming ESA achieved by the Work Programme providers.

So what's different about the support that B-UK offers?

Firstly, we are a disabled peoples' organisation, an ethical organisation which is majority controlled by disabled people and is committed to supporting disabled people towards independence. We have an ethos of using the social model of disability to shape what we do and how we do it. It means many of our staff are role models for the disabled people who use our services, and that our staff understand the dynamics and the barriers to looking for work for disabled people. Within this we are a successful enterprise: we deliver on our contracts, our clients value our services, our business is sound.

Secondly, we have always offered a personalised service: we start by asking our clients what they want - it really is as simple as that. We may need to help them with a reality check, if their expectations are overly ambitious to begin with, but then it's our job to give them the support, find the training, arrange the placement or the interview, and so on.

Thirdly, we are driven by what disabled people tell us. We still monitor contracts, we do have targets, we have to generate income: these are all possible whilst providing a service that disabled people value. And here is the key that unlocks the whole debate: finally, disabled people have the legal right to choose. And often, when they realise this, they choose a service designed and delivered by disabled people.

Another development that we have grasped – although not originally planned for – is our service for Deaf and Hard of Hearing people. This is a subset of disabled people that experiences high rates of unemployment: Action on Hearing Loss[2] says that deaf people are twice as likely as the general population to be unemployed and is not well catered for in terms of employment support.

When we recruited more Employment Support Officers one of the successful candidates was a deaf man who found out that DEAs had very few deaf people on their books and promptly began outreach with the deaf community. Deaf[3] people tend not to go to JC+ because there is little or no communication support, nor an understanding of the barriers that the deaf community face.

B-UK offers a one to one service to Deaf and Hard of Hearing people, with free communication support: this is critical – many services, including JC+, do not offer communication support! Also, our service is Deaf-led and this is crucial in engaging the confidence of the deaf community as they will be reassured that their issues will be understood and dealt with. The value in having deaf role models – there are now two deaf people delivering this service – cannot be overstated. With ten clients on the books, and with more and more outreach being delivered, this innovative (yes, really!) service seems poised to increase.

The messages, we believe, are clear. Disabled jobseekers want choice, and information to facilitate that choice. They want a truly personalised service, not a range of options from a limited menu. And if they’re not satisfied with the service that they get, well they want to vote with their feet and look for a better service. And this is what is starting to happen.

The ‘Right’ to choose is what is driving these changes as Deaf and disabled people choose B-UK to deliver their employment support. As a result, Breakthrough has been able to employ 8 new Employment Brokers and develop a new service in response to demand. And Deaf and disabled people are finding a service they’re satisfied with – oh yes, and getting jobs!



[3] Language is organic, and not always simple! Deaf, with a capital ‘D’, tends to be used to define a political approach to deafness whilst ‘deaf’ encompasses the whole of the deaf community.

Is it really beyond our ability to fund independent living?
Is it really beyond our ability to fund independent living?
3 May 2013

The Independent Living Strategy (ILS),[1] published in March 2008, sets out actions aimed at improving the choice and control disabled people have over the services they need to live their daily lives.

The aims of the strategy are that:

  • disabled people (including older disabled people) who need support to go about their daily lives will have greater choice and control over how support is provided.
  • disabled people (including older disabled people) will have greater access to housing, education, employment, leisure and transport opportunities and to participation in family and community life.

If these fine words seem familiar, that may be because they are quoted directly from the website of the Office for Disability Issues, and can reasonably be taken to be a statement of government intent, if not strictly policy. And yet, at the end of April judgement went against five disabled people who had sought a judicial review over the government’s decision to end the Independent Living Fund (ILF) in March 2014 and to devolve funding instead to local authorities. Moreover, it appears that the central government funds will transfer for one year only: there is silence about what happens after that.

The government has justified this decision by arguing that this will mean funds are more directly targeted at local need. And yet, when we raised the matter of the proposed closure of the ILF with some corporate local government policy officers who were developing policy responses to welfare reform changes, they had not heard of the ILF, and confused it with Disability Living Allowance. We have to ask how prepared local government is to deal with the impact of ILF changes. Not only that, how will current ILF recipients fare if their local authority follows Barnet’s model of outsourcing all the LA services, how will their independence be maintained and protected?

So, what's the plan?

The ILF was set up as an interim measure in 1988, pending the implementation of Community Care legislation and a benefit review. The original purpose was to ensure that people with a high level of support needs would get the resources needed to enable them to live in the community rather than have to 'go into' residential care. In 1993 the Independent Living Extension Fund was launched and changed to require local authority (LA) financial support, although the criteria for awarding ILF is different than that for LA payments.

The excellent ‘Improving the Life Chances of Disabled People’ report was archived by the Coalition very early on, and had not been heard of since. A seeming survivor, the Independent Living Strategy (ILS) was a cross-government project, coordinated by the Office for Disability Issues and published in 2008. It aimed to fill the gap "between national policy and people's real experiences" and included commitments to promote a shared understanding of the principles and practice of independent living, to strengthen the evidence basis to inform policy development and to redeploy resources from professional assessment to user-led support.

On 13 February 2013 the Government published ‘Fulfilling Potential: Building a deeper understanding of disability in the UK today’.

The aims of ‘Fulfilling Potential: Building Understanding’ are:

  • to provide an analysis of the current evidence on disability in the UK to inform the development of the next stage of work on Fulfilling Potential – the development of actions, outcomes and indicators
  • to inform public understanding and prompt debate about disability and the issues faced by disabled people
  • to raise awareness, drive a change in attitudes and support an increase in commitment to improving the lives of disabled people in the UK today

Currently the ILF supports some 19,000 disabled people with high levels of support needs: it costs the government just £320 million each year, hardly a factor in the austerity debate and not a ‘cut’ that will make a noticeable financial contribution to UK plc; for example the National Audit Office assesses that £456.33 billion is still owed from the bank bailouts, whilst Lloyds Banking Group reported a pre-tax profit of £2.04 billion for the first quarter of 2013. Is it really beyond our ability to fund independent living?

In fact, there has been no calculation as to what the closure of the ILF might cost, in terms of local authority payments and actions for example, and the potentially negative impacts on the health and well being of those 19,000 people.

The five people who challenged the government’s decision argued that in the consultation
a) only one alternative option was considered - to close the ILF,
b) not enough information was given on the differences between LA support and ILF support,
c) no impact assessment was carried out.

Why did the case fail? Concerns have been expressed that the government may have misrepresented responses to the consultation, particularly from the Association of Directors of Adult Social Services (ADDSS) and the Local Government Association (LGA). The government said that both these bodies showed strong support for the changes, but their written evidence apparently tells a different tale. Moreover, it is hard to reconcile the closure of the ILF with the fine aims laid out in the opening of this article. Nor is it clear just how the decision to close the ILF will help the government deliver against the United Nations Convention on the Rights of Persons with Disabilities particularly article 19, living independently and being included in the community, and article 23, respect for the home and the family, both quoted on the ODI website. Neither is this decision in line with the Independent Living Strategy, which had wide cross-party support.

Now, the five disabled people who brought the ILF judicial review have vowed to take this matter to appeal but, understandably, they are concerned: even with legal support, and other supporters, the toll must be heavy. Five people cannot achieve this alone.

It seems clear that independence for disabled people is no longer the priority it was for central government, but where is the coordinated and supportive movement of disabled people's organisations that is needed: have we dropped the ball completely?

But maybe there’s a ray of hope . . . . the Independent Living Strategy made a commitment that, if sufficient progress had not been made against the outcomes by 2013, the government would review the case for legislation. Maybe this could be a campaign that mobilises and reunifies disabled people’s organisations?

Lorraine Gradwell.

2nd May 2013.


A rose by any other name
A rose by any other name
7 September 2012

“The sloppiness in our language makes it easier for us to have foolish thoughts” – George Orwell

A rose by any other name . . . would smell as sweet; of course. The implication being that the substance or content is the same, no matter what the name. And in a superficial sense this is true. As a disabled woman I remain the same person no matter what you call me — or do I?

I often get called a ‘service user’ or ‘client’; I rarely get called ‘handicapped’ these days but I have been called ‘cripple!’ in the street. And at the airport I was called a ‘wheelchair charlie’ by the ground crew. My children call me Mum.

In truth, the names we get called — and the status of the people doing the naming — can have an enormous impact on our lives. As another old saying goes ‘mud sticks’, and if you refer to someone in a particular way for long enough then both the named and the namer come to absorb the underlying message which describes and categorises a person or group of people.

Disabled people have traditionally been ‘named’ by the medical, welfare and charitable powers and described in terms of what is ‘wrong’ with us. Many names which are now seen as insults are derived from medical terminology — mongol, spastic, cretin, idiot — even the more generic ‘invalid’, ‘handicapped’ and ‘disabled’ have roots in negative concepts of being at a disadvantage, being neither valid nor able.

Language is a moveable feast and the disabled people’s movement has been built on an examination of what it really is to be a disabled person. Disabled people debated and analysed their situation and arrived at ‘the social model of disability’. This is in contrast to the ‘medical model of disability’ which says that the individual has something wrong with them (eg, they cannot hear) and because of that they are unable to carry out a whole range of activities, such as holding a conversation and using the telephone.

The social model says that all people are different but that society does not take account of everybody’s differences; so, for example, if all children learned British Sign language (BSL) at primary school then deaf people would not need to lip-read and use interpreters. If the existing technology which produces text telephones were incorporated into everyday phone systems then deaf people would have access to this form of communication. The people would be unchanged, no miracle cure needed, but the barriers would be removed.

This rather simplified explanation demonstrates that the social model provides the solution to much, but not all, of the exclusion that disabled people face. If society were to remove the barriers that it constantly places before us, then the disability would mostly be removed.

The disabled people’s movement adopted the words ‘impairment’ and ‘disability’ to describe ourselves and our situation. It is important to understand the distinction.

Disability is the disadvantage, or restriction of activity, caused by a society which takes little or no account of people who have impairments - and thus excludes them from mainstream activity. Impairment is a characteristic, feature or attribute within an individual which is long term and may or may not be the result of illness, disease, injury or congenital condition.

Disabled people, then, are those people with impairments who are disabled by society. This includes people with physical impairments, people with visual impairments, deaf people, people who are hard of hearing, people with learning difficulties and people who have or have had mental health needs or mental distress. Impairment neither causes nor justifies disability. Disability, like racism or sexism, is discrimination and social oppression.

It is easy to see why the term ‘people with disabilities’ is unhelpful — it implies that we ‘own’ the disability, rather than recognising that it is society which disables us.

I was once in a conference workshop explaining the social model and a participant shook his head and said ‘Phew, that’s a bit heavy isn’t it?’ Well, maybe it is, but without a clear analysis of what it means to be a disabled person and, leading on from that, some commonly held understanding of where the problems arise and how to tackle them, then the situation of disabled people in our society will not improve.
The social model also requires that, instead of grouping disabled people into, for example, deaf people, blind people, wheelchair users and so on, and trying to identify solutions for individuals, we look instead at the common barriers which exclude disabled people from mainstream activities and services. This does not mean that individual solutions are to be ignored, far from it, but that they should take place in an environment of barrier removal.

These barriers can generally be grouped under three headings, namely, physical, organisational, and attitudinal. Physical barriers are steps, stairs, inadequate signs, lack of visual fire alarms, and so on, while organisational barriers are the systems and processes which exclude us, even though the environment may be accessible. A classic example is the ‘accessible’ toilet, stuffed with mops and buckets (go and look). Or maybe your organisation has induction loops, but neither trains staff to use them nor proactively publishes their availability.

Finally, attitudinal barriers underpin all the others, and continue to discriminate against disabled people in all walks of life. There is plenty of research to show that the attitude of employers, for example, is a major reason why disabled people do not get jobs. The traditional view of disabled people, as passive, dependent, vulnerable and needing care, prevails in all walks of life, and assumptions are made about our wants and needs. We are not necessarily thought of as partners and lovers, parents, or children of elderly dependent parents. These stereotypes influence service planning and delivery and ensure that disabled people continue to be excluded from mainstream provision.

In terms of healthcare and the widest range of health services, disabled people are seen in a very particular way. Thus it is that no matter whether I present at the clinic with athlete’s foot or pregnancy, it’s all viewed via my impairment. Services aimed specifically at disabled people — rehabilitation services, for example — are generally designed and implemented in an accessible way, but mainstream services are a different matter. First, disabled people need to know that the full range of healthcare services is accessible to them throughout their lifetime, from school clinics and ante-natal care to sports injuries clinics and services for elderly people. Second, disabled people need to be confident that they can accompany and support their children, friends, partners and parents in their access to healthcare.

This is, of course, a pretty tall order and if it is tackled from the medical model approach it will never come remotely close to being achieved. The social model, however, requires the removal of barriers, and once removed the benefits apply to many, many people, not just a single person.

In order to remove barriers we must first identify them: this is not the simple process it might seem. Many physical barriers are easily noted — those steps at the front entrance, the poor lighting in the main corridor, the lack of an induction loop at reception — but it is easy to overlook other physical barriers, while organisational and attitudinal barriers are much harder to identify and move. Expert input is required from disabled people’s own organisations which have built up a wealth of experience in this area and can often provide advice and training on all aspects of access.

As Humpty Dumpty said:

‘A word means exactly what I intend it to mean, no more nor less’.

In terms of planning, delivering, monitoring and evaluating services it is essential that we all understand the terminology we use, and this is why definitions are so important; they underpin our understanding.

The social model is still a new way of understanding the situation of disabled people, and requires a whole new mind-set for many people. But the last century has surely demonstrated that the medical model has done practically nothing to effect change for disabled people. The tremendous changes of the last 15 to 20 years in relation to our activities and access to mainstream society have demonstrated the success and validity of the social model.

And finally. . . . people often reveal one of their greatest worries as ‘saying the wrong thing’. Don’t let this stop you exploring the issues with others — by ‘saying the wrong thing’ you will enter into discussion, exchange ideas, and widen your understanding. Above all, have the debates and make the changes.

Lorraine Gradwell (adapted from an earlier article)
September 2012.