A time for action!

I have briefly described a history of the UK disability movement in a previous blog. However I will revisit some of this history here.

In the 1970s disabled people began to self mobilise for the first time. What drew people together was not proximity – e.g. being located in the same residential home, or the same educational establishment, though this proximity did bring some groups of people together.

What united many groups in the 1970s was a sense of commonality of interest – e.g. a belief that disabled people could bring about societal change, to increase the inclusion of disabled people in employment, education and ‘regular’ neighbourhoods.

To achieve this equality of treatment and opportunity required political mobilisation. So disabled people self-mobilised.

The broader direction of travel of the disability movement has radically changed from the early, more militant days of disability mobilisation. The fight for a new, political understanding of disability galvanised early activity. In the 1980s this broadened to describe disability culture and the place of disabled people in society. There was a growth in disability arts movements, a rise in academic interest in disability issues with the creation of a new field of Disability Studies in universities, and a broader questioning of the representation of disability in the media, including film, radio and television.

There was also a questioning of the way disability services were created and delivered. New and innovative approaches were tried and tested, starting with the development of ‘Indirect Payments’. A Local Authority (LA) commissioned a Disabled People’s Organisation (DPO) to work with individual disabled people to recruit, interview and employ Personal Assistants. The individual disabled person would decide who worked for him/her, who came into his/her house, at what times, and for what duties. The service user became the employer.

This worked really well for the individual, the DPO, and LA. The project rolled out to a few LAs, the government noticed it and produced legislation to give any LA the power to give an individual a direct payment instead of a service. DPOs were not required within this Direct Payments process.

Disabled people and DPOs campaigned about the patchwork of Direct Payment service provision across the country. There was little or no consistency of provision. To the power was changed to become a duty – every LA had to provide direct payments to disabled people.

What happened next is interesting. The New Labour Government recognised this ability for DPOs to come up with good ideas to improve service provision locally. They therefore legislated for the need for every local authority across the UK to have a Centre for Independent Living (CIL) by 2010 – Recommendation 4.3 of the Improving Life Chances for Disabled People legislation.

When some LA areas proved unlikely to achieve Recommendation 4.3, it was modified to require that every LA should have a User Led Organisation (ULO) by 2010,.

DPOs became ULOs.

Over the next ten or so years much time, effort, and money, was produced to push an agenda driven to increase ULO involvement in LA provision. The Department of Health ran several projects to increase ULO capacity. The Disability LIB (Listen, Include, Build) Project was created by a consortium of ULOs, funded by the Lottery, to work with organisations across the country.

Direct Payments morphed into Individual Budgets, which mutated into Personal Budgets. It was envisaged that ULOs could secure contracts from the LA to deliver Personal Budgets, at great savings to the LA, while increasing service user satisfaction.

There was a real momentum. Small organisations turned into medium-sized organisations. Jobs were created. There was a whole new sub-sector within the voluntary sector appearing before our very eyes, with a valuable range of skills and expertise, managed and led by disabled people.

It felt like we were given a plan of how to build a shiny, accessible new car. We were trained to build this car, and provided with all the pieces we needed. When the car was built we were given petrol to put in the tank and a map of where to drive it. Along the way we were renamed as ULOs. It was a really exciting time of growth and development.

So we followed the instructions, built the car, drove it to a clearing in the forest where all the new, shiny contracts were going to be waiting to keep our lovely new car on the road, only to find there was nothing there.

Silence.

The national government had forgotten to require the LA to do anything, but had merely suggested it. Some LAs dived in, entered into new relationships with their ULO partners, and started ‘co-producing’ new services, or new ways of delivering existing services. Some of these LAs did this and also saved money, while increased service user satisfaction. But many did not. They kept their services in-house, and carried on doing stuff ‘to’ disabled people, instead of ‘with’ them.

All over the country disabled people find themselves sitting in these shiny new ULOs, waiting for something to happen, for something to appear from their LA to get them moving again. Instead LA grants are vanishing – there’s no money anywhere. Contracts are not appearing as services are kept in-house to keep staff in jobs. And ULOs are down-sizing and disappearing. In London up to 5 ULOs are closing every month.

We need to get vocal about the journey we have in some ways been forced, or at least pushed/encouraged, to take. ULOs employ large numbers of disabled people, and include even more as unpaid volunteers. ULOs have access to large amounts of social and cultural capitals. The inclusion project is still in its infancy, but it is working at the ULO level. Disabled and non-disabled people work together to deliver quality services. Where LAs work effectively with their ULO there is increased access in local provision for the whole community – in all services provided by the LA (not just social care provision), as well as within the broader community.

We need action now to regain the momentum and to recharge the debate.