Consumer Control Principles in Independent Living

Summary

Consumer control in independent living centers means having a governing body comprised of at least 51 percent of its membership with people with disabilities. It means having people with disabilities in key management roles. It means having direct service staff with disabilities who work with consumers to define their own needs, on their own terms, and with their own solutions. It means having people with disabilities in support and clerical staff positions. It means involving volunteers with disabilities in the center’s daily operations. It means that stakeholders in the process — people with disabilities — play significant roles in deciding the issues and methods for advocacy efforts.

The principle of consumer control recognizes that people with disabilities should control their own destiny. It ensures their full control over the direction, composition, and operation of the organization that serves them. The principle of consumer control is translated into organizational policies by the board of directors and operationalized into practice by the management and staff of the center. This translation of consumer control principles into consistent, effective organizational practices results in the exercise of power by consumers over the center and its services, and contributes to its influence in the community it serves.

The practical applications of the consumer control principle must be flexible if services and advocacy efforts are to represent and respond to the varying interests and diversity among consumers in the communities served by the ILC. Across the country, independent living centers reflect wide diversity in practice while adhering to the principle of consumer control. 

Source: Shreve, Spiller, Griffen, Waldron, and Stolzman. Consumer Control in Independent Living, Chapter 2, Center for Resource Management, Inc., South Hampton, NH, 1988 and Cyber CIL

“In matters of principle, stand like a rock…”
-Thomas Jefferson

In many organizations, the consideration of principles, values, and mission is a rare occurrence seldom connected to planning and action. In independent living centers, however, such considerations need to occur on a continual basis. These discussions are necessary for the formation of a collective consciousness that connects daily operations, successes, and dilemmas to the principle of consumer control. However, in developing a common understanding of the principle of consumer control, centers must also arrive at a common definition for the term “consumer.”

Within the independent living field, precisely defining “consumer” and developing policies that address the role of consumers in governance, administration, staffing, service delivery, and advocacy proved to be a complex task. Early definitions focused on the participant in services, but ignored other individuals who are intended beneficiaries of independent living activities–both direct and indirect.

A broader definition of consumer has evolved and is now commonly used in the independent living field:

A consumer is any individual with a disability who may be a past, present, or future participant in independent living services or one who may indirectly benefit from independent living advocacy efforts.

This definition, which is reflected in this monograph, addresses the pivotal interaction of the independent living center with the larger community and the center’s need to respond to a broad array of issues facing citizens with varying disabilities and ethnic, economic, and cultural differences. It addresses the need for broad-based representation of persons from cross-disability and demographic categories and lays the foundation for an organization that can serve as “a source of support and pride to [all] disabled people in the community and as a symbol of productivity and self-reliance for the broader social and economic community” (Challenge of Emerging Leadership, Mott Foundation Report, 1983). With this broader definition, organizations are charged with creating policies and establishing practices that emphasize the principle of consumer control as representing the cross-disability and social/cultural diversity that exists within their communities.

Defining “Consumer Control”

“Consumer control” is defined as: significant representation, power, authority, and influence of individuals with varying disabilities in all aspects of an organization that provides services to enhance independence and that seeks to change the political, social, and economic environment and quality of life possible for all disabled persons.

Translating consumer control principles into consumer control practices requires the exercise of authority by consumers over the organization itself, the exercise of choice by consumers over the services they receive, and the exercise of influence by the organization in overcoming the community barriers that inhibit its consumer population.

Consumer control practices apply to:

  • organizational decision-making
  • policy development
  • planning
  • staffing patterns
  • service approaches
  • volunteer involvement
  • approach to the community
  • definition of target population
  • community advocacy priorities

Consumer control is achieved and sustained by an organization that maintains the ability to be molded by its constituency. To implement consumer control principles, four areas comprising the full range of center functions and operations need attention: policy making; staffing; services; and community advocacy.

In the remainder of this chapter, the principle of consumer control is defined in the context of major functional areas of an independent living center’s operations.

Consumer Control At The Policy Level

In non-profit corporations, the board of directors is the legal entity empowered to establish the value base of the organization, develop policies, and oversee the affairs of the corporation. The board of directors assumes an important “stewardship” function in ensuring that the mission is fulfilled and that public funds are efficiently and appropriately expended. Since independent living centers are a product of consumer self-advocacy, it follows that the board of directors is defined as a majority of individuals with disabilities who are knowledgeable about the desires and needs of consumers and who possess a critical range of other specialized knowledge and expertise relevant to governance in non-profit organizations. Indeed, the standards issued by the National Council on the Handicapped in 1985, with broad approval from leaders in the field, state that the board of directors of independent living centers should be comprised of at least 51 percent representation by persons with disabilities.

A board of directors comprised of a majority of persons with disabilities is an important way of enacting the principle of consumer control. But it is not enough. The board must ensure that the sovereignty of consumers pervades the mission, long range goals and plans, and policies that govern staffing, financial, and service delivery decisions. More than any other group or individual, the board influences the integrity and strength of the organization’s commitment to consumer control and other core values of the independent living movement.

Consumer Control At The Staffing Level

Consumer control at the staffing level means ensuring that the management and staff positions are held by people with disabilities. These employment opportunities ensure significant influence by people with disabilities in administrative decision-making, service design and delivery, and community advocacy activities.

At the staffing level, consumer control can be viewed as a chain of management events and decisions. The executive director, who is a critical link in the chain, serves as the interface between the policy-making function at the board level and the implementation of policy at the staff level. The director is responsible for maintaining consistency between policy and practices and fulfilling the mission through achieving operational goals. As chief executive officer, the director is responsible for planning, staffing, resource development and allocation, and monitoring service quality. Thus, the executive director’s perspective on consumer control is a critical variable in translating principles into appropriate and effective center practices.

Service delivery and support staff also constitute important links in the staffing chain. Adhering to the principles of consumer control assumes that center staff reflect disability representation and have opportunities for substantive participation and input. Staff with disabilities who are grounded in the philosophy of the movement, able to operationalize its values, and share in the experience of disability with consumers are critical to enacting principles of consumer control. By hiring people with disabilities, centers demonstrate an understanding of the need for consumer trust and acceptance and the importance of staff credibility. A unique and critically valuable feature of independent living center staffing is an emphasis on hiring persons with disabilities to provide consumer-defined services to their peers. Independent living centers committed to consumer controlled service delivery have staffing plans that build upon shared life experiences as a means of enhancing communication about life options.

It is also important to recruit and hire people with disabilities in support staff and clerical positions. This demonstrates the center’s commitment to consumer representation. Finally, another means of broadening consumer control within a center is to recruit and involve people with disabilities in volunteer positions. Volunteers can perform countless functions within a center. By promoting people with disabilities in these capacities, the center can be strengthened and the individuals volunteering can increase their skills and confidence.

Consumer Control Over Services

While there is rich diversity in service delivery methods in centers across the country, the over-riding commonality and central characteristic of the independent living service delivery model is consumer control over the design and direction of services. Consumer control over services means that it is the consumer who has the primary responsibility for identifying needs, setting goals, developing plans and strategies, and achieving independent living objectives. Consumers in this model are active participants in the service process rather than passive recipients, as in the traditional medical or rehabilitation model of service delivery. Staff function as resource identifiers, support providers, facilitators, and peer tutors.

The language commonly used in centers is itself consistent with this general theme: “consumer” of services, rather than “client” is the term of choice because it assumes an active role based on equality and mutuality of experience and a particpatory process.

Peer relationships are one of the key features of services organized around the principle of consumer control. In peer relationships, the two parties meet as equals. They share a common life experience with disability and have faced many of the same issues and barriers in their pursuit of independence. Services delivered by peers provide an effective avenue for dealing with a variety of issues within the context of a service relationship based on an understanding of common life experiences and barriers to independence.

Consumer control over services is, to borrow a phrase from the private sector, “a market driven economy” in which the consumer has primacy in the process.

Consumer Control Over The Advocacy Agenda

Advocacy is an essential element in a center’s programmatic design. Indeed, advocacy has been seen by many leaders in the field as the “cornerstone” of the movement in that its efforts and activities are designed to amplify the individual consumer’s voice in order to change the political, social, and economic environment that prevents achieving independence and maximum quality of life. Operationalizing the principle of consumer control in advocacy requires that all key players – board, staff, and consumers – be provided with opportunities to share perspectives, knowledge, and information about needed changes in the environment and participate in activities designed to affect the desired changes. Community advocacy activities involve knowledge of the external environment, a commitment to providing opportunities to participate in the development of the advocacy agenda, and the experience and skills necessary to achieve the desired results. Through individual and collective advocacy efforts, people with disabilities acquire skills, abilities, and a greater understanding of how to affect the world in which they live. The involvement and control of people with disabilities in an independent living center’s advocacy efforts is fundamental to the independent living mission of creating change and empowering people with disabilities to expand individual and community options and enhance the quality of their lives.

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