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  • Independent Living Research Utilization

    Facilitating Consumer Leadership in

    Service Systems A Toolkit for Agency Implementation

  • © May 2007 by ILRU ILRU is a program of Memorial Hermann/TIRR (The Institute for Rehabilitation and Research) ILRU Program 2323 S. Shepherd, Suite 1000 Houston, TX 77019 713.520.0232 (Voice and TTY) 713.520.5785 (Fax) http://www.ilru.org Lex Frieden ILRU Director Richard Petty ILRU Program Director Editor: Darrell Jones Publications Staff: Sharon Finney, Marisa Demaya, and Marjorie Gordon Permission is granted for duplication of any portion of this publication, providing that the authors and ILRU are credited: Holt, J., Jones, D., Petty, R., [Others to be determined] (Authors). (2007). Facilitating Consumer Leadership in Service Systems: A Toolkit for Agency Implementation. Houston, Texas: ILRU. Support for development of this publication was provided by the Centers for Medicare and Medicaid Services under Grant No. 18-P-91554/2-01. No official endorsement of the funder should be inferred.


  • Facilitating Consumer Leadership in Service Systems

    A Toolkit for Agency Implementation


    Much has been said and written about consumer-direction in services and systems which support community living for people with disabilities. However, although consumer-directed services are available in an increasing number of states and communities, the next step to consumer-directed service systems has yet to be systematically addressed. Many states have established consumer task forces or advisory boards that include consumers but very few have made systemic consumer direction a goal. Systemic consumer direction moves beyond an advisory board and it moves beyond service delivery which allows choice and control over one’s services. Its focus is a functional partnership between consumers and state agencies that exists throughout the processes, procedures, and policies that characterize service systems. Authentic partnership with consumers would occur at each step along the continuum including design, implementation, and evaluation. Consumers would be respected as leaders as well as service recipients.

    The purpose of this Toolkit is to provide state agencies with an array of practical guidelines, recommendations, and checklists designed to enhance their capacity to create and sustain partnerships with individuals with disabilities to participate meaningfully in the decision-making process at the systems level.

    State service systems are confronting enormous challenges in conceptualizing and creating sustainable programs that maximize the independence, real choices, rights, and integration of people with disabilities. This statement also reflects an underlying problem of considerable proportion: that is, service systems design and fund programs that address the needs, not of the designers and implementers themselves, but of another population---individuals with disabilities. In essence one group (with legal authority and funding responsibilities) is deciding what is best for another group who is fundamentally unrepresented in the decision-making process at the state level.

    Individuals with disabilities have first hand knowledge of the supports they need and the barriers to obtaining these supports. Consumers intimately know what the difficulties are in programs designed to assist them and are painfully aware of the disincentives in existing systems that restrict their rights or impose segregation and isolation. On the other hand, the policymakers, legislators, and administrators know the governing statutory and regulatory requirements of such services and supports and the omnipresent funding limitations and restrictions.

  • These considerations make it clear that these two groups of people -- consumers and policymakers -- each bring valued expertise to the table and, working as partners, can more effectively address the crucial system change initiatives facing each state.

    But the challenge of collaborative partnership is not just substituting old paternalistic words and phrases (safety, security, supervision) for newer ones (self-determination, choice, community participation). Nor is it expanding the number of individuals with disabilities serving on various committees, workgroups, etc. Authentic partnership can fundamentally change the roles and relationships of service systems and service users in the process of system transformation.

    The challenges to this system transformation are formidable. In the midst of this change, it has become evident that the aspirations will not be met unless all constituencies come together as equal and contributing partners. A system cannot be transformed unless those who use and rely on it for key services and supports have a voice in shaping its new dimensions. Likewise, the new and dynamic system must have the input of those who know the legal, regulatory, and fiscal guidelines and constraints.

    This Toolkit presents ideas, techniques, and mechanisms that may be useful to state policymakers in developing and establishing working partnerships with consumers that will allow the two groups to combine their areas of knowledge to maximize the efficiency and effectiveness of supports and services. The ultimate goal is increased independence, freedom, rights, and integration of individuals with disabilities. In order to accomplish this, each group in the partnership must learn how to communicate with one another, respect one another, and trust one another.


    This paper is written primarily for executives, managers, and staffs of state agencies and service organizations involved in planning, administering, and delivering home- and community-based services. Much of the success of the HCBS initiative has resulted from the work of those managers, sometimes not at the executive level of their organizations, who have shown the commitment and skill required to navigate and influence change within their own organizations. Implementing consumer direction will require that same kind of commitment and skill and the authors of this paper trust that those managers can put to good use what is offered here, for much of what is presented has been drawn from what we have learned from many of those successful managers.

    Consumer direction involves sharing power in a way that is uncommon for many organizations—many are struggling with how they will replace old autocratic management approaches with new approaches in which power and authority is shared more equitably within their organizations. Consumer direction calls

  • leaders to take even one more step toward new approaches: not only is power shared within an organization, but constituents from outside are brought to the table where decisions are made and those constituents come there as full partners. Successful managers will be challenged to garner the support of the highest level leadership within their organizations and they will also need to be constant promoters of the new concept with their peers and associates. The authors of this paper hope that we can offer tools, techniques and suggestions that will help managers pave the way for lasting change.

  • Part One: Consumer-directed Service Systems

    Consumer leadership at the state systems level is the next logical step in the evolution of service systems. Every time a state agency engages in planning activities, proposes service configurations, reviews the status of services provided, monitors the effectiveness of the services, and evaluates programs and systems, the agency leaders should ask themselves the questions: “Have we involved recipients of service and other consumer advocates in this process?” and “Have they been engaged in a meaningful way?” Meaningful implies that the consumers were not token representatives of the disability community but rather had real power and authority in the decisions that were made. The means of involving/engaging consumer partners should occur through several different methods. A single method is unlikely to meet the myriad instances when it is critical to have consumer input. For instance, if state agencies limit themselves to just an advisory board, they will miss perspectives and consumers who may have some important things to say to them but don’t want to serve on a board.

    For state agencies, the concept of consumer partnership provides a framework to always stop and ask, “Have we involved consumers?” “How can we involve consumers in innovative ways?” And “Do we really know what consumers are thinking about what we’re doing?”

    For instance, here are some of the ways state agencies receive input and feedback. Are consumers fully included and engaged in meaningful roles and responsibilities in these activities?

    • Planning and implementation boards • Strategic planning or visioning meetings which would involve a broader

    array of constituencies than a board would (See http://www.hcbs.org/files/40/1979/findcomground-1.pdf as an example of an inclusive visioning meeting)

    • Task forces focused on specific issues which may be time limited • Focus groups that are conducted following accepted procedures (See

    Appendix X). • Roundtables at regional/national conferences (many consumer

    organizations are open to considering proposals for a credible agency to offer a session at their conferences)

    • Opinion surveys (something other than service satisfaction s