Time to take back the Independent Living agenda

Over the years we have witnessed tension arising from differing understandings as to the idea of Independent Living and what it means and, as a consequence, service providers and existing or potential users don’t always meet eye to eye.

Our understanding of Independent Living is enabling a holistic and self-determined lifestyle, and not just an existence in one’s own home, which sometimes can be an isolating experience. A service provider’s understanding is often based on a resource led approach which is more about hands on, getting up and going to bed, and these kinds of tasks which disabled people would sometimes refer to as the ‘bed and breakfast syndrome’. In other words, basic survival not ‘quality of life’. We firmly believe that Independent Living has to be based on the principles of quality of life issues. Independent Living as a concept has been developed over many years by disabled people however its purpose and principles could equally apply to other groups of people who require support in order to have a decent quality of life.

The tensions that exist around Independent Living are not just between users and service providers; political parties, trade unions, the general public and disabled people themselves have little or no agreed understanding of what it means. Since the 1990s we have seen the threats to Independent Living and corruption of it as a concept grow. John Evans listed some of these as far back as 2003:

  • Firstly, there is the Direct Payments legislation, while on the one hand it has spread Direct Payments into new areas, on the other hand it has made everything more bureaucratic. This means that there is more monitoring, reviewing and more paranoia about accountability about public money.
  • The now common trend of cut backs in services due to tight budgets. Unfortunately, disabled people always seem to be the first to be hit by this. It often used as an excuse.
  • Authorities who are insistent on a service resource led assessment approach, as opposed to a needs led approach, which hinders the development of Direct Payment schemes.
  • The use and practice of rigid accountability criteria, which is applied as a controlling mechanism to ration service delivery.
  • The dreaded introduction of charging policies in order to try and claw back more money from users to cover the cost of services. This has been one of our biggest challenges now for some time, and we still have a way to go to counteract this.
  • The constant reorganisation of local authorities and the way they provide Social Services. We have been inundated with many legislative changes recently with local government reform, modernising Social Services and Best Value, to mention a few. All of these have been disruptive in developing Direct Payments because they have diverted attention, policy and finance .
  • The lack of continuity of Care Managers, which has also been worsened recently by the current shortage of Social Workers. This has meant that we have lost key allies in Social Services when they have moved on. It has also meant that the assessment process in many areas has lacked consistency by the high turnover of Social Workers, long waiting times, and the incompetence of others.
  • The recent development of the market place economy of Social Services provision of purchasers and providers. This has meant there has been more competition of providers of support services, which has often meant a deterioration in the quality of services. It has also made it more difficult for disabled people to have control when run by other agencies.
  • There has also been the development of the “consumerist” view of Direct Payments, as seeing it as “just another service”. This is usually from those, who did not experience the pioneering days and do not identify with the movement. We need to spread the message.
  • There is also the apathy of our fellow disabled people. Many do not want to commit themselves or get involved. Are they content? Have we failed to communicate effectively with them? It seems we need to redouble our efforts here.
  • There is no requirement to provide advocacy or other support for people who need assistance to manage direct payments.
  • Last but not least, because Independent Living and Direct Payments have become fashionable there has been a proliferation of Independent Providers, which has meant disabled peoples organisations have been competing for tenders to run Direct Payments schemes. This has become one of our battle grounds where we have seen many of our organisations lose out on the Contracts.

Fifteen years on, many of these ‘threats’ have become detrimental reality. In some areas Direct Payments are used as tools to cut services which leave disabled people with neither choice nor control. The recent survey by Being the Boss illustrated the harmful impact Austerity and the crisis within Social Care is having on those wishing to live independent lives.

Too often the lack of understanding about Independent Living and reaction to the crisis within Social Care means the issues associated with it become invisible and absent from the agenda. How many of our potential or actual allies view the crisis within Social Care in ways which are often to the detriment of both the campaign for Independent Living and disabled people? The focus on the health aspects of ‘Social Care’ above all else harms not just disabled people, but older people as well who are often subjected to the ‘bed and breakfast syndrome’. People of all ages, irrespective of the nature of their lifestyles, are entitled to a decent quality of life however the current system as it now is can’t and won’t deliver.

These are frightening times for disabled people, especially those who require support. If things are going to change for the better, then we need to work with and educate allies about the need for disabled people to take back control of the independent living agenda.