Independent Living as a concept is probably best exemplified in Independent Living Centres. A recent Centre study examined three of these Centres in Kitchener, Winnipeg and Calgary. Several other Centres are emerging across Canada. Consumer control is one of the essential elements of the Independent Living Centre movement.
Canada’s disabled self-help groups have recently developed their own exciting form of consumer controlled Independent Living (Resource) Centres. Each Independent Living Centre is dedicated to promoting the overall concept of consumer direction and control over personal and community resources that affect a disabled person’s daily living. Information and referral services, peer support and independent living skills, individual advocacy, research resource co-ordination, and direct services are essential components of any accredited Canadian Independent Living Centre. Each Independent Living Centre’s structure and program planning system should be designed to enable consumers to manage and control the major functions and directions of their Centre.
Simply stated, the principle of “consumer control” and direction means that the consumer must have a direct say over the type, quality, and nature of the systems and services by which resources are provided. Traditional rehabilitation approaches have often expected the consumer to be a passive recipient of scheduled services. In contrast, an independent living advocate would argue that all people have the right to exercise maximum control, responsibility and risk over their own lives. The independent living philosophy argues that it is ultimately more beneficial for purposes of human development if each consumer has direct control over who provides what type of service where, when, and how. These elements all reduce dependence and maximize independent living and community participation.
When we carefully analyze the meaning and application of consumer control, it soon becomes evident that this independent living principle can be applied to any number of sharable community resources, or human delivery systems, which are intended to enable a disabled person to fully participate in our society.
Canadian Independent Living (Resource) Centres have been mandated by the disabled consumer movement to demonstrate this principle of consumer control. Each ILC must serve as a beacon, setting forth clear examples of consumer control in its own operations, in its delivery of independent living services, as well as in their monitoring of other service agencies, that claim to be providing independent living services.
A true Independent Living Centre will ensure that each aspect of the organization and its programs involve meaningful “consumer control.” At a practical level, consumer control is expressed on some of the following ways:
- Embodied in the ILC’s Mission Statement: A central proclamation of a consumer controlled structure signals to all levels of society those principles which constitute the underlying operating process of the organization and ultimate goals of the program.
- Majority of Elected Board Consumers: As the central decision-making authority, the majority of the Board must be consumers. In some ILCs, 51% of the Board positions are first elected from consumer candidates running for office. Then a second ballot is held for remaining positions open to all candidates not elected on the first ballot.
- Staff with Consumer Experience: While hiring staff members with disabilities does not constitute the political meaning of consumer control, it is fair to say that Independent Living Centres having a staff with a variety of disabilities could better relate to most consumers, and also demonstrates an additional component of consumer input.
- Program Planning and Evaluation: The actual delivery of independent living information, peer support, IL skills, advocacy and service development requires ongoing input from members and prospective consumers. Initial planning of independent living services and service evaluation by users also foster greater consumer control. Specific advisory committees for each distinctive program can be helpful to reflect both a variety of consumers and other community expertise. New ILC programs, if they truly represent an unmet need, will most often come from consumers who have identified a specific need in their daily lives.
- Promoting Self-Agency Management Skills: An Independent Living Centre’s advocacy support staff must always enable consumers to develop their own self-help advocacy and resource management skills, rather than advocate for the consumer, unless specifically requested. Advocacy skills learning sessions, as well as individual back-up support from independent advocacy staff on how to solve landlord, income security and other human rights issues, etc. can greatly assist a disabled consumer learn to take control of their own negotiation/ decision-making opportunities.
- Open Door Drop-in Office: Each Independent Living Centre should provide disabled consumers with a sense that it’s their place: to always feel welcome, to visit or browse in the Independent Living Library, discover and share information and offer new suggestions to committees or staff. Consumers sensing their own feelings of ownership are very crucial to the Independent Living Centre’s true purpose and potential for achieving success.
The acid test of consumer control is probably best measured by judging what influence consumers have over the way programs are developed and the methods of delivery. Independent Living Centres will undoubtedly survive the test of time, if and only if, they continually enhance opportunities for control must permeate the entire structure of and Independent Centre. It should build leadership and personal skills in the consumer. Implementing this principle clearly strengthens the Independent Living Centre’s base and capacity to service many more new consumers especially those who are still searching for their own personal lifestyles and goals of Independent Living.