As with the USA, the concept of disabled people controlling their own support system started with a small group of disabled people being given money to employ their own personal assistants to live a fulfilling life in the community. But this time the group were not university students, but residents of a residential home in Hampshire, England. Project 81, the International Year of People with Disabilities, appealed to the right-wing neoliberal government at that time, which favoured self-help and self-responsibility for one’s own welfare. Here, disabled people were being taken from dependency on others in expensive care homes, to the independence of their self-directed support in the community.
Project 81 sparked interest throughout England and more and more local authorities were persuaded to follow this new neoliberal concept of disabled people managing their own support systems. But in Scotland, which has its own health and social care system, with a more community-oriented culture, personal assistance was slow to develop.
This reluctance to change was gradually overcome by the introduction of the Independent Living Fund (ILF). Set up, again by the neoliberal government in England, the Fund covered the whole of the United Kingdom. People, at risk of being institutionalised, could apply to the Fund for money to pay for private agency support, or to employ their own personal assistance.
However, in Scotland, we have the Social Work (Scotland) Act of 1968, which only allows local authorities to supply services, not money. So, there was an initial structural barrier to fund personal assistance. This allowed several authorities to put a blanket ‘NO’ on the development of personal assistance. Others, however, more in tune with disabled people’s clamour to control their own support system, found a way around the 1968 Act, by giving the money to a third party to pass on to disabled people, or use themselves to manage people’s payroll. This “indirect payment” then enabled the growth of personal assistance in Scotland.
The Community Care (Direct Payment) Act of 1996 ‘legalised’ local authorities’ circumnavigation of the 1968 Act. This was principally due to changes in the eligibility criteria for the ILF in 1993. In that year people were stopped from going to the ILF, directly, for funding. They had to, first, apply to their local authority for support. The local authority then had to put £300 per week into the support package before money from the ILF could be accessed.
This two-tier funding system was stopped in 2015, when the UK Government closed the Fund. People, from then on have had to receive the full cost of their personal assistance from local authorities. Some more research needs to be done, but the general account is that many people have had their support packages reduced since 2015.
Although there had been many headaches, managing two streams of money, the loss of the ILF, with its ‘can do’, supportive approach to personal assistance is very much lost. Even in Scotland where a new ILF was established to maintain the support of those Scottish recipients, it is merely a closed fund. This means no-one new can apply for funding. A small additional fund has been established, but this is time-limited and only helps people during the transition period between child and adult care.
Nonetheless by 2013, the Scottish Government had passed the Social Work (Self-Directed Support) (Scotland) Act. This set ‘self-directed support’ as the default position for social care intervention. People are now able to choose the manner of their social care intervention. They can have the choice of receiving:
The legislative history of personal assistance has seen great strides at the national level, but much resistance at the local level. Much of this resistance can be found in the lack of training and positive supervision of social workers, at the coal face, but this lacking has a background of professional resistance to a perception of loss of power and prestige. Empowering people to become self-managers of their own affairs, is not as noteworthy and safe as being responsible for their welfare and security. This, coupled with the rise of managerial neoliberalism, where the pound precedes the need, has destroyed the ethics of social work and the relationship between the social worker and their client. Social work intervention is received with fear, and its task orientation breaks the trust between worker and client. As one disabled person said of her assessment: “It was mental torture”.
With the rise in the popularity of personal assistance, a couple of things are happening which are quite worrying. First, Enable, a large organisation for people with learning difficulties have re-named their staff as ‘Personal Assistants’. This is rather troubling because these ‘Personal Assistants’ have the same job descriptions as traditional care workers. They are also still directly accountable to Enable, not the people they support, despite the insistence that the person can ‘choose’ their ‘personal assistant’. This is questionable, as it is uncertain how much input the person has to the writing of the job description or where the post has been advertised.
The other issue is the new policy of including ‘personal assistants’ within the mainline social care workforce. This could mean that personal assistants will be included in the ‘national framework’ of social care training, registration and regulation. PA employers have been told they will be involved in this move, and there are presently no desire to regulate PAs, but they will be welcome to join any training and registration facilities. The worry is there may be ‘mission creep’ whereby personal assistants will eventually be trained, registered and regulated alongside mainstream care workers. This would lead to personal assistants being divorced from their philosophical basis within the independent living movement.
Finally, there is yet another local inhibitor to personal assistance in Scotland, which is the lack of peer support around the management of personal assistance. Back in 2005, the Tony Blair Cabinet Office recommended that there should be one Centre for Independent/Integrated Living in every local authority, by 2025. That time limit is only two years away, and research has shown that the peer support system for self-directed support is withering, rather than blooming.
Those few, in Project 81, are now thousands up and down these British Isles. Those few in 1981 knew about independent living and the need to be in control of their lives and those support to make their lives meaningful. That is not necessarily the case for those thousands of people who are now getting direct payments. Without understanding the value of the history of independent living and the struggle many of us had to acquire that societal shift, the real essence of self-directed support will be lost. That is why we need so badly, the continuous involvement of the Independent Living Movement, through the establishment, throughout the land, of Centres for Independent/Integrated Living.
OBE DUniv PhD BA (Hons)
Born with cerebral palsy, James Elder-Woodward has had life-long experience of disability, not only as a health and social service user, but also as a service provider, planner and researcher.
After taking a degree in psychology, he studied health and social welfare in Sweden, Germany, Israel and Albania. In the UK he has worked for central government, local authorities, the health service, the voluntary sector and universities.
He retired from Glasgow City Council in 1999, where he was a Senior Social Work Officer (Physical Disability). Whilst working within local government he established both indirect and direct payments throughout the west of Scotland. Alongside other disabled people, he also developed the Glasgow Centre for Inclusive Living. He is now:
He has written a number of articles and papers on disability and independent living, including co-authoring a book for social care workers on the subject.
He controls his own 24/7 personal support system. A widower, he lives close to Loch Lomond, Scotland.
The next article in the Disability Rights Defenders Newsletter September 2023 is: