It's MY life - An introduction to Independent Living
Gateshead Personal Assistance Pilot Project
by Stuart Bracking and Ross Cowan
Independent Living
Independent Living is when Disabled people enjoy the same opportunities to live and participate in the community as non-disabled people, free of any forced dependency upon their family or friends, and can exercise choice and control over the decisions affecting their own lives.
As a philosophy, it is based on four assumptions:
- All human life is of value;
- Anyone, whatever their impairment, is capable of exerting choices;
- People have the right to take control over their lives;
- Disabled people have the right to participate fully in society.
"Independent living is used in a practical and common sense way to simply mean being able to achieve our goals. The point is that independent people have control over their lives, not that they perform every task themselves. Independence is not linked to the physical or intellectual capacity to care for oneself without assistance; independence is created by having assistance when and how one requires it"Simon Brisenden
in "Charter for Personal Care".
This idea developed amongst Disabled people themselves as a response to the discrimination and exclusion they experience when they wish to live in the community or take part in those mainstream social, cultural or leisure activities non-disabled people are able to take for granted.
Personal Assistance
Personal Assistance is about the right of Disabled people who require physical support (whether in their personal, domestic, social, educational or employment activities) to be able to buy, manage and control enough of that support to lead as full and spontaneous a life as a non-disabled person.
Personal Assistance allows a Disabled person to choose and employ their own personal assistant, to do what they want, when they want it done.
Personal Assistance enables a Disabled person to:
- live in their own home;
- have personal and social relationships on equal terms;
- fulfill their role as a parent or partner;
- have access to education;
- take on work;
- participate in the social and political life of the community.
Personal Assistance and the Care model
Personal Assistance is therefore very different from the traditional Care model of looking after Disabled people.
Care is about having resources provided and delivered in a way which suits the provider or carer.
Personal Assistance is about Disabled people controlling their own resources and support staff.
In a Care approach, the carer decides what work tasks need done and when they will do them. In a Personal Assistance situation, the Disabled person gives instructions to their personal assistant.
In a Care situation, the carer is responsible for protecting their own health and safety. In contrast, a personal assistant works under the direction of the Disabled person to ensure that health and safety issues are considered and effective risk assessments are made.
Personal Assistance and Care are influenced by different approaches to Disability, the social and medical models respectively.
What is Disability?
There are two definitions of disability, one called the medical or individual model and the other called the social model. The social model is preferred and used by organisations and groups controlled by Disabled people.
The Medical Model
According to the medical model, which is primarily expressed through the World Health Organisations's definition, the individual Disabled person is seen as the problem.
"Disability is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being".World Health Organisation
This model views the body as sick or defective and as being in need of a cure. It believes Disabled people are sometimes physically unable to do those everyday activities that non-disabled people can take for granted because of their bodies. For example, it is seen as better - or more "normal" - for a person to be able to stand and walk, even if slowly and with difficulty, than to get around more quickly and comfortably using a wheelchair.
The problem with the medical model is that it only highlights some of the things which dis-able a person and puts all the emphasis on the individual.
Therefore Disabled people can end up saying:
"I cannot get involved in the youth club committee because I cannot hear".
"I cannot go to my local school because I use a wheelchair and it has lots of steps and narrow doors"
"I cannot get a job because my cerebral palsy stops me getting on the bus to get to work".
Organisations who use the medical model of disability believe the solution to these problems is to be able to offer individual medical aids or operations which would enable the person to become more mobile or "normal", or otherwise teach someone to accept their lot.
The Social Model
This model is an entirely different approach from the medical model. It comes from Disabled people's own experiences and is used by all Disabled people's organisations.
It accepts that Disabled people have medical conditions which may inhibit them and which may need medical treatment from time to time.
"Disability is the disadvantage or restriction of activity caused by a society which takes little or no account of people who have impairments and thus excludes them from mainstream activity. (Therefore disability, like racism or sexism, is discrimination and social exclusion)".British Council of Organisations of Disabled People
But it goes on to argue that most of the day to day problems that Disabled people face are caused by the fact that they live in a hostile, disabling world which is largely designed to suit non-disabled people.
An inability to walk is an impairment whereas the inability to get to the first floor of a building because there is no lift is a disability.
An inability to move one's body is an impairment but an inability to get out of bed because suitable physical or mechanical help is not available is a disability.
Under the social model, Disabled people have impairments which affects their bodies. The Disability is the disadvantage or lack of opportunity caused by the social, physical and attitudinal barriers which society places in their way.
The social model allows Disabled people to say:
"I can't get on a bus because it is not accessible".
"I can't get a decent education because my local college does not support me properly".
"I can't live independently because not enough accessible homes are being built".
"I can't afford a personal assistant because my local council will not pay for the assistance I need".
It is possible to see the results of Disability oppression and discrimination around us.
- Disabled people are more likely to be out of work than non-disabled people;
- special schools are often the only option for Disabled children;
- Disabled people are unnecessarily segregated because of a badly - designed, built environment (high kerbs, steps, narrow doors, poor lighting and so on);
- people assume Disabled people can't do things or choose to tell them what is best for them.
Using the social model, Disabled people are able to identify the factors, which disable them, and can choose to work towards doing something about them. They can feel good about themselves when their lives are not going well. Disabled people can say it's not me or my body that is at fault, but the society around me.
By helping to draw attention to the barriers in society, the social model offers solutions which are wider than trying to change the person or curing the individual impairment. The Disabled person ceases to be a tragic failure and can be seen as someone who is discriminated against by the way society is organised.
"The most common causes of disability word wide are poverty, economic exploitation, pollution, war and torture. Disabled people are the poorest of the poor. The barriers we face are more than attitudinal or architectural, they are institutionalised in our legislation and in our social practice which ascribes to Disabled people the status of receivers and not providers. Our starting point then, is a political one".
Christine Wilson, quoted in "Disability Equality in the Classroom".
There have been a number of important influences and developments in society that have shaped the emergence of Independent Living.
A move away from institutionalisation
Community care policies followed by successive governments since the 1960s have partly been a response to the dehumanising effects of institutionalisation, and a recognition by policy makers that Disabled people with severe impairments can function effectively in the community with the right support.
Revolt in residential homes
In Britain, some Disabled people living in residential homes began from the 1960s to raise the idea that they should be allowed to live in the community with paid support to meet their personal and domestic needs.
Developing community based services
Change in attitudes led to the development of community based services, such as Homecare. Initially provided to meet the needs of exhospital residents, particularly those leaving large mental health institutions, it also led to service provision for those Disabled and older people who had always lived in the community.
Prior to the 1970s they had relied upon family support or their own financial resources or did without.
The American experience
In America, from the early 1970s, there was a rapid growth of Centres of Independent Living (CILs), what were then a new type of organisation. This development occurred initially in Berkeley in California after Disabled students, who used assistants to meet their needs, demanded and won the right to live in the community after their studies ended.
Britain establishes its own CILs
In the early 1980s, following visits to America and the growing awareness of the American Independent Living Movement amongst Disabled activists in this country, CILs started in Britain.
They were initially developed in Hampshire and Derbyshire where there were significant numbers of Disabled people who were in the process of moving, from residential homes or were already living independently.
An important feature of the Hampsire CIL was that its founders had gained control of the money, which had formerly been paid by their local authority to keep them in residential care.
Self-organisation
The 1970s saw the development of new social movements such as the women's movement which were based on self- organisation.
This approach was taken up by a number of Disabled people in Britain from the mid-1970s. They established the idea that Disabled people were capable of controlling, staffing and managing their own organisations, including CILs.
Individual pressure
More and more individuals began to demand the right to live independently as Disabled people´s expectations and involvement in society began to rapidly change.
This was particularly true of young Disabled people who had moved away from their parental home after attending college or university, and those who became impaired after an accident or illness and wanted to continue pursuing an active life.
Use of volunteers
In the 1980s, responding to the demands of Disabled people who could only live in the community if they had access to personal assistants, Community Service Volunteers set-up a scheme which allowed Disabled people to have access to live-in personal assistants.
These personal assistants were only paid pocket money, but received their board and lodgings.
National demonstration
As more and more Disabled people employed their own p.a.´s, pressure grew for a proper, nationally funded scheme. There was a large national demonstration in London in 1988, after the Social Security Act had abolished the Domestic Assistance Addition, which some Disabled people had used to employ p.a.´s.
Independent Living Fund
Finally, in 1988, the government responded to the pressure and established the Independent Living Fund (ILF). This was an independent body, funded by the government, to which Disabled people could directly apply for a weekly payment.
This money was used to pay for personal assistants rather than having to rely upon volunteers. Disabled people could now directly employ their own staff or use agency workers and many were able to put together quite complex Personal Assistance packages.
Demand explodes
Initially the ILF had a budget of £5 million a year and was designed to help 400 to 500 Disabled people of all ages. There was a slow uptake in the first year, and then the demand exploded.
By the end of 1992, the ILF was spending £97 million on about 18,000 people, many of whom had a chance to have their needs met properly for the first time.
Independent Living Fund (´93)
Government concerns about how much this was all costing led to major rule changes in the ILF in 1993. The original ILF was closed down and those receiving payments from it were transferred to the Independent Living (Extension) Fund. These people continue to receive payments from that fund in the same way.
A second fund, the Independent Living Fund ´93, was established for new claimants. Disabled people now have to apply trough their local Social Services department. To qualify, Social Services have to:
- supply them with more than £200 of services a week;
- agree to put in an application to the ILF on their behalf.
Social Services policies on the use of ILF vary considerably and many do not understand its potential. This, consequently, leads to great variation in the use of personal assistants throughout the country.
Also, where local authorities do promote the use of ILF, they could not, by law, directly pay Disabled people the cash equivalent, were obliged to use a third party scheme such as a non-charitable trust or Independent Living organisation.
This created practical difficulties and removed choice and control from some Disabled people.
Community Care (Direct Payments) Act 1996
The new ILF rules often meant an unsatisfactory mixture of cash from the ILF and services from the Social Services was being provided. This led to demands from Disabled people and some local authorities for a more flexible system of providing payments to Disabled people. The Direct Payments Act was the government's answer.
The Social Services department still carries out an assessment of a Disabled person's needs. However, instead of the local council directly providing or arranging services to meet those needs, they make an equivalent cash payment - a Direct Payment - to the Disabled person. They can then use the payment to arrange their own services.
This Act is a further step forward but it still leaves a number of problems for Disabled people.
The option of making Direct Payments is discretionary rather than mandatory. It is up to local authorities to decide when and how to implement this Act.
They can choose the rules for assessing which individuals are "willing and able" to enjoy the opportunities afforded by the Act. This assessment will be very different from authority to authority.
On the positive side though, recent research indicated that all but four local authorities in England and Wales are considering making Direct Payments available.
What Disabled people have achieved
The last 20 years have seen significant improvements in the opportunities available to Disabled people to live independently, to have access to support workers and to choose a Personal Assistance approaches.
- residential care is no longer the main option for Disabled people needing Personal Assistance.
- there has been an acceptance that Disabled people can choose, if they so wish, to live independently in the community.
- Disabled people have won the right, at least in some areas, to design and manage complex care packages.
- there has been an acceptance by the government, with the introduction of Direct Payments that Disabled people can handle money.
- with the introduction of the Disability Living Allowance, the Independent Living Funds and Direct Payments more money is available to Disabled people who want to fund a Personal Assistance package.
Problems remain
- a number of local authorities have yet to introduce any form of Direct Payments scheme.
- several local authorities are insisting on the use of 3rd party organisations to provide services. They are refusing Disabled people the choice as to whether they can directly employ someone.
- very few local authorities are considering offering Direct Payments to those with a learning difficulty and those who experience emotional distress.
- there is no justification to exclude people over 65 from receiving Direct Payments.
- some local authorities have a poor record in applying to the Independent Living Fund on behalf of their Disabled residents and deny them, and their own Social Services departments, a valuable source of funding.
The way forward
- provide Direct Payments to all who would benefit from them, regardless of age or impairment.
- offer Disabled people a real choice between local authority services, 3rd part provision and individual control.
- establish a network of support schemes throughout the country, which could provide the training, advice and support that many Disabled people need in order to make Independent Living a realistic choice.
Publications
If you would like to read more about Independent Living and Personal Assistance, we would recommend the following publications. All of these books and guides are in the Council on Disability's reference library at John Haswell House.
The library is open for public use every weekday morning from 9.30 to 12.30. It can also be used in the afternoons if you arrange a time in advance.
Controlling your own Personal Assistance Services
by The National Centre for Independent Living
An introductory guide to Personal Assistance aimed at Disabled people. Free copies are available from GPAPP.
Personal Assistance Users Newsletter
by BCODP Independent Living Sub Committe
News and views about Personal Assistance written by and for Disabled people.
SOCS News
by Hampshire CIL
A monthly newsletter by one of the first Independent Living schemes in the country. Full of tips and discussion points from Personal Assistance users.
What do I want to do?
by GPAPP
A DIY guide to self-assessment for Disabled people working out what Personal Assistance they might want. Free copies available.
Recruiting a personal assistant
by GPAPP
A guide for Disabled people planning to recruit a personal assistant including information on job descriptions, application forms, advertising and so on. Free copies available.
A Guide to Receiving Direct payments
by Department of Health
A good introductory guide to Direct Payments, written for Disabled people. Free copies available.
Independent Lives
by Jenny Morris
Combining a disability rights and feminist perspective, this book examines Disabled people´s experiences of community care and challenges the traditional care approach.
Funding Freedom
by Values into Action
A good concise guide to making Direct Payments to people with learning difficulties.
More information
If you live or work in the Borough of Gateshead and you would like our help in recruiting a personal assistant or if you just want more information about any aspect of Personal Assistance, please contact:
- Gateshead Personal Assistance Pilot Project
John Haswell House
8/9 Gladstone Terrace
Gateshead
NE8 4DY(0191) 477 3558 (voice)
(0191) 478 4082 (minicom)
(0191) 477 1260 (fax)
or, if you live outside Gateshead, please contact:
- National Centre for Independent Living
250 Kennington Lane
London
SE11 5RD0171 587 1663 (voice)
0171 587 1177 (minicom)
0171 582 2469 (fax)
or
visit our web site at: http://www.disabilitygateshead.org.uk
Published in May 1998 by:
- Gateshead Personal Assistance Pilot Project
Gateshead Council on Disability © -All rights reserved 1998
John Haswell House
8/9 Gladstone Terrace
Gateshead
NE8 4DY0191 477 3558 (voice)
0191 478 4082 (minicom VII)
0191 477 1260 (fax)
gpapp@disabilitygateshead.org.ukUsers of this Guide are welcome to photocopy sections for personal use by themselves, friends, clients and so on. Copyright is waived for this purpose.
With this sole exception, no part of this Guide may be reproduced in whole or in part, in any form or by any means, without the express permission of the Gateshead Council on Disability.
Funded By
GPAPP is a project of Gateshead Council on Disability. Gateshead Council on Disability is a Registered Charity no: 700677 and a Company Limited by Guarantee registered in England no:2216540. Registered Office: 8/9 Gladstone Terrace, Gateshead NE8 4DY.
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