What is Personal Assistance?

What is Personal Assistance?

Personal assistance is the support a disabled person needs from another person for everyday living.  The important aspect of personal assistance is that the disabled person chooses who will assist and how that assistance will be given.

Examples of tasks a personal assistant (PA) may assist with are:

• Shopping, cooking, cleaning, laundry, ironing
• Personal tasks such as eating, washing, dressing
• Guiding, reading, carrying or moving items

The Disabled People’s Movement and Independent Living Movement campaigned for many years for disabled people to have the right to control our own assistance.

Why not have support from family and friends?

Disabled people should have the right to choose how to receive the assistance we need.

Often disabled people are not given this choice. Partners, family or friends become the unpaid ‘carer’. This can be problematic, because we are not in control of how the assistance is given. For example, if you have had a disagreement with your partner, it is hard to ask for and receive assistance from them. A disabled person may not want their family knowing all their business, or may wish to go somewhere no one else wants to go.

Relying solely on this ‘informal support’ can greatly restrict a disabled person’s life choices.

Why use the word assistance?

We use the word assistance instead of help, because the word help is used in a negative way when applied to disabled people. Disabled people are often seen as needing help, and we want society to move away from the idea of disabled people being ‘needy’ and ‘helpless’.

Why say personal assistant and not carer?

The word carer suggests that the disabled person is being ‘cared for’ as a passive recipient with little control over their situation.

The role of a carer is often seen as heroic and self-sacrificing. The general public’s view is of someone giving up their own life to support a partner or family member. A personal assistant on the other hand, is paid to do a job, and the disabled person directs how tasks should be completed by the personal assistant. In theory, this should apply to all paid support.

Sometimes when disabled people receive support through a third party, such as an agency, it is hard to direct the agency staff. Some see themselves as carers and have a stereotyped view of disabled people as passive receivers of care.

GMCDP and other organisations use the term personal assistance because it is less emotive than care, and shows the disabled person is in control of the assistance they receive.

Is there a difference between personal assistants, support workers and carers?

The roles of personal assistants and support workers can vary, although some people do use the terms interchangeably. Some examples of how these terms can be used are as follows:

A personal assistant may do a variety of personal, domestic and administrative tasks, for example: assisting with personal hygiene, dressing, cooking, shopping, reading, filing papers. A personal assistant does not generally assist with making decisions or choices.

A support worker may assist with domestic tasks, administrative tasks, communication, and making decisions and choices. For example: cooking/cleaning, reading or writing letters, sign language interpreting, assisting with a picture/word board. Some support workers also assist disabled people to make decisions and organise everyday tasks such as deciding how to get somewhere, or what to eat. A support worker does not usually assist with personal care, such as going to the toilet or dressing.

‘Support worker’ may also be used as the job title of someone employed to support a disabled person in their workplace. Access to Work is a government scheme which provides funding for resources, such as a support worker or technical equipment, to make the workplace and job tasks more accessible.

A carer is someone who gives help or support, but the disabled person is not in control of how and/or when that support is given. It is the term often used by agencies for their staff, and is also used to mean unpaid informal support, such as from family and partner.

These distinctions may seem confusing, especially as the different terms are often mixed up. The most important thing to remember is that, whatever words are used to describe the assistant, the disabled person should be in control.

Further reading

Barnes, Colin, (1992) ‘Making Our Own Choices: Report of the BCODP Conference on Independent Living and Personal Assistance’. Available as a PDF document from:
http://disability-studies.leeds.ac.uk/files/library/Barnes
-making-our-own-choices.pdf

‘From Le Court to Strasbourg: Fighting for Independent Living for 30 Years’. Available as a PDF document from:
http://disability-studies.leeds.ac.uk/files/library/2-From-Le-Court-to-Strasbourg.pdf

Evans, John, (2003) ‘The Independent Living Movement in the UK’.
www.independentliving.org/docs6/evans2003.html

Evans, John, (2008) ‘Independent Living in the UK – development, accomplishments and impact on social policy and legislation’.
www.independentliving.org/25years2008evans

Zukas, H. (1975) ‘The history of the Berkeley Centre for Independent living (CIL)’
http://www.independentliving.org/docs3/zukas.html