At the start of the Strengthening Disabled People’s User-Led Organisation Programme (on which more here) I wrote an article that unfortunately wasn’t published. (I’ve never been renowned for my engaging writing style, it has to be said.) Following Peter Beresford’s thoughts on the same topic, below is that article on disabled people’s user-led organisations and their role in service delivery (one of the many facets of things they do).
Organisations which are run by and for disabled people should play a vital role in providing important services that enable disabled people to have choice and control over their lives.
The reason for this follows from a very simple premise: with their experience as service users, disabled people are often best-placed to know what they want from organisations and so are best-placed to run them.
This is a crucial time for disabled people and their organisations. As well as some under-representation of people with learning disabilities or mental health conditions, disabled people’s user-led organisations (DPULOs) have been seen mainly within the context of adult social care over the last few years. This is to miss the difference they can and do make in many areas of life. DPULOs should be central in addressing issues like disability hate crime, in securing the representation of disabled people in health and social care through local HealthWatch organisations, and in encouraging a greater uptake of Access to Work (recently called the government’s “best kept secret”).
The new Strengthening DPULOs Programme provides a range of practical and financial support to address the challenges DPULOs face and make them stronger and more sustainable for the future. The Programme includes 12 Ambassadors who will champion DPULOs in their local areas, influencing commissioners across the public sector to recognise and value the contribution DPULOs make.
Similarly, experts – drawn from a variety of different backgrounds – will support DPULOs (when they ask for it) to translate the “what” they want to do into the “how” to do it.
Lastly, a £3million Facilitation Fund will provide some financial resource to DPULOs that they otherwise could not easily secure for things that will make a difference to their strength and sustainability.
The Government’s recent Open Public Services White Paper was a clear articulation of its aims for reforming public services. It called for greater diversity in the mix of providers to deliver different types of services: by the private, independent and voluntary sectors, as well as by mutual and employee-owned organisations (so-called “John Lewis”-type organisations).
Disabled people’s user-led organisations should be a part of that mix. Not only this, but DPULOs also have a role as a representative voice of disabled people at a grass-roots level, influencing and lobbying at a local, regional and national level. They can also raise expectations and change attitudes when it comes to disability equality more broadly.
The main value that DPULOs can add is that of legitimacy and credibility, based on a fundamental understanding of the lived experience of their members and clients that other organisations don’t have in the same way.
As with the voluntary sector more broadly, the question of independence is one that comes up regularly: can a DPULO delivering a service under contract to a local authority, or one that receives ongoing grant funding, bite the hand that feeds it? It’s a question the recently convened Panel on the Independence of the Voluntary Sector will be grappling with. In gathering their evidence, they may want to take on board the perspectives of members or Trustees of DPULOs up and down the country who navigate this day-to-day complexity with passion, determination and nous.
As well as being the authentic representative voice of disabled people at a grass-roots level, DPULOs can play a vital part in the public service reform agenda. Amongst the undoubted challenges that they and their members face, DPULOs should also seize the opportunities the reform agenda presents.
The £3m Programme is one means by which this can be realised: it is up to all of us who demand disability equality to ensure the opportunity is taken.
arbitrary constant 