Persons with extensive disabilities need assistance by other people in their everyday lives with such activities as getting bathed and dressed or going to the toilet; with shopping, preparing meals, cleaning or doing the laundry; with such responsibilities within the family as doing the practical tasks involved in raising small children or assisting one' s aging parents. Assistants help the user at work, about town and on travel. They assist in communicating or in structuring the day, as the case might be. In brief, assistants help with those activities which the user would have done by himself or herself, had it not been for a physical, sensory, mental or intellectual disability.
Just as other persons with less extensive disabilities can compensate their functional limitations by using assistive devices, assistance - if properly organized - can enable us to become fully-functioning citizens. Doing everything by oneself is not always the most efficient way of achieving one´s goals. What counts is to get things done according to one´s own needs and wishes.
People who are dependent on others for the most basic needs of life face prejudices. For instance, somebody who is physically dependent on other persons may also be considered emotionally and intellectually dependent. Somebody who cannot pull up his or her pants like a small child, may be treated as a small child in other respects as well. The result is often over-protection and custodial care where other people make the decisions.
It is no surprise then that the Independent Living philosophy is most easily grasped by people who are dependent on assistance in their every-day lives. This is also the reason why the Independent Living Movement emphasizes the importance of the quality of assistance for users who want to achieve maximum independence. In order to provide an operational definition for quality, the Independent Living Movement coined and defined the term "personal assistance":
"Personal" assistance means that users exercise the maximum control over how services are organised and custom-design their services according to their individual needs, capabilities, life circumstances and aspirations. In particular, personal assistance requires that the individual user decides :
•owho is to work, •owith which tasks, •oat which times, •owhere and how.
Thus, the individual user must be able to recruit, train, schedule, supervise, and, if necessary, fire his or her own assistants. Simply put, "personal assistance", means that the user is the boss.
It is recognized that users with learning or mental disabilities will need support from third persons with these functions.
Personal assistance enables users to take their rightful place in family, at work and society with all the rights and duties that the general population takes for granted. With personal assistance persons with extensive disabilities need no longer be a burden on their families. Parents, husbands or wives do not need to stay at home and sacrifice their careers. Personal assistance users not only manage on their own, they can also take their share of household and child-rearing. With personal assistance we can attend school and educate ourselves, enter the labour market and become tax-payers. When we fall in love, our partners need not fear that they are about to sign up for a life-long 24 hour job.
Most existing services cannot be called "personal" assistance because they are tied to given physical locations, such as institutions, and not to the individual who needs the service. Thus, the user has to follow the service rather than the other way around. In this way, many disabled persons spend their lives away from their families in institutions, since assistance is provided only in the institution but not in the community.
Most community-based services do not provide "personal" assistance either, because the individual user is not in the position to recruit assistants and has to accept assistance from available staff. Inherent in these solutions is their hierarchical structure with the user at the bottom and the user' s dependency on the decisions and rules made by other people. Also, whenever several users share the same staff, freedom of movement and choices are severely limited.
Other limitations exist when assistants do not have proper employment contracts and wages. Under these circumstances users can neither demand quality work, attention and reliability nor can they feel fully in charge.
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