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, http://www.skillsforcare.org.uk/research/latest_research_reports/the_workforce_implications_of_adults.aspx
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.