Introductory Material

The relationships between health professionals and the people they serve have changed enormously in the last 25 years. Today, we value collaboration and partnership as essential to the delivery of high quality health care. And we also recognize that health care "consumers"  have invaluable contributions to make to policy and program development.

Throughout our country, parents of children with special health care needs and adults with chronic conditions work side-by-side with professionals to shape programs, organizations, and service systems. More and more, these consumers play key leadership roles  in human service organizations. They serve on boards of directors and advisory councils, participate as faculty in training programs for health and education professionals, act as mentors to other consumers, review grants and other funding requests, and work as paid staff in both for-profit and not-for-profit programs.

The range of responsibilities that consumers have assumed, as well as the speed at which the consumer movement has taken hold, show how important consumers'perspectives and expertise are in ensuring high quality, responsive programs. It is no longer “cutting edge” to engage consumers in decision-making roles; it is fast becoming the norm. The consumer movement is now a widespread part of the human service landscape, engaging a diverse group of people with first-hand experience as recipients of services.

As increasing numbers of consumers move into leadership positions there is a strong need, and a wonderful opportunity, to put forth a set of principles to help guide them in their behavior and practice — a kind of “roadmap” for negotiating the inevitable twists and turns that accompany their new roles.

This handbook, “Rules for the Road,” is an effort to do just that — to capture in writing the values and beliefs that consumers in leadership positions hold near and dear. It is based on the wisdom of experienced consumers  from all across the country who have wrestled with the daily dilemmas that accompany leadership.

“Rules for the Road” was developed in a spirit of excitement and optimism to provide guidance, support, and practical advice to consumers who are working hard every day to improve the humanity and responsiveness of the service system. We hope it will help to smooth the bumpy patches on the journey and illuminate the way ahead.

Rules for the Road: Why Do Consumers Need Them?
An explicit statement of values and best practices can be enormously helpful in guiding behavior and resolving dilemmas. In fact most, if not all, professional disciplines have such a written code . Professionals use these codes to influence their actions and to support them in doing the right thing when confronted with a difficult circumstance.

Currently, however, consumers have no such explicit, commonly-agreed-upon statement of principles. The work they are doing is trailblazing, at times even ambiguous, yet many consumers have been left to find their way largely alone. Unlike their professional colleagues — who must pass an exam or demonstrate a certain set of skills before they can practice — consumers are typically not required to master a common course of study to qualify for their leadership roles. Nor do they have a formal organization standing behind them with a set of practice standards, requirements for membership, and explicit behavioral expectations.

Add to these challenges the reality that consumers come to their leadership positions with a tremendous range of experience and sophistication. All have first-hand knowledge of the service system and are committed to improving it. But the similarities usually stop there. Some consumers have advanced academic degrees, while others have never finished high school. Some have been in the workplace for years, but some have never held a job before. Most have had no formal training in ethics or in handling conflicts of interest, but all consumers have to deal with these difficult issues as they arise in their lives and in their work. These variations in training and experience are worsened when consumers work in isolation, without a peer group and, often, without adequate supervision.

In spite of their passion to make things better for others, consumers are hindered by the lack of a shared set of clearly articulated values and best practices. Without a statement of principles to guide their thinking and actions, consumers may be vulnerable in their leadership positions. They need and deserve an explicit list of fundamental principles that make clear their responsibilities to themselves, their employers, their colleagues, and to other consumers who receive services.

Developing the Handbook: The Process
The Genetics Services Branch, Division of Services for Children with Special Health Care Needs, Maternal and Child Health Bureau, Health Resources and Services Administration convened a diverse, experienced group of consumers who provided the vision and the wisdom for this handbook. They spent a day, along with several professional colleagues, describing the kinds of philosophical and practical challenges that consumers typically encounter when they assume a leadership role. The workgroup then developed a list of principles, or fundamentals, to guide consumers'actions and behaviors in facing these challenges. Over the next several months, these statements were reviewed and refined until 12 Fundamentals for Practice emerged as the guiding “rules for the road.”

The next step was to develop examples to show each fundamental principle in action. The examples bring to life the varied and complicated situations that consumers encounter in their work. Each of the examples — which are drawn from the real-life experiences of consumers — offers a clear and vivid demonstration of how the Fundamentals for Practice can serve to guide and support consumers in their daily work. They tell the stories of real consumers struggling with the philosophical and the practical demands of their roles. The examples are the heart and soul of this manual.

“Rules for the Road” also includes several easy-to-use tools to help consumers gain traction if they find themselves on slippery ground. They offer simple, straightforward strategies to use in combination with the 12 Fundamentals for Practice when challenging dilemmas arise. And finally, there are three Scenarios for Discussion to generate further reflection and conversation about the complex issues explored in this manual.

“Rules for the Road” is meant to be a living document — to be added to or modified over time — so that it speaks to the current realities and concerns of consumers in leadership positions. To make sure of that, we are asking for your feedback. Do you find the material relevant? Is the handbook easy-to-use? What changes or additions would you suggest? Use the evaluation form to send us your thoughts.  Or phone us at 1-800-396-5694.  We look forward to hearing from you.