Lessons Learned: II. THE BARRIERS
The structures of Step Ahead and First Steps present obstacles that make consumer involvment more difficult. There are major differences between the structures of Step Ahead and First Steps and those of many successful models of citizen action groups from around the country. It is important to understand these differences and to recognize that in many ways consumer involvement in these initiatives--or in any which look to "bringing in" consumers--may continue to be an uphill battle. Most of the success stories about consumer participation are initiated and developed by individuals or groups at the grass roots level. Many involve already-functioning organizations such as churches or neighborhood groups who come together from a pre-existing power base. They are often neighborhood-based and place an emphasis on local community leadership training and development. Consumers hold the positions of power and make the decisions about what the group will do. The focus of the group's activities grows out of direct concerns the members have about their own lives, families and neighborhoods. Successful models are built upon relationships. Each "emphasizes in its every effort a respect for diversity, tolerance, self-determination, and the right of all people to be treated with dignity" (Walker, 1987, p. 420). The ultimate goals for many of these groups are the transfer of power to communities and the transformation of individuals and neighborhoods. The following story, from The Quickening of America (Lappé and DuBois) and featured in a recent Step Ahead of St. Joseph County newsletter, is an example of successful consumer involvement:
In contrast, the structures of Step Ahead and First Steps have already been developed with little or no consumer participation. Membership, from the state level to the county level, is primarily composed of service providers and other professionals. When consumers attempt to fit into this existing structure, they may find that the power has already been allocated, the leaders are professionals, the room for consumers is limited, and the issues have already been defined. Leadership development and building relationships are usually not priorities and transference of power is seldom the goal. Even if consumers are welcomed, especially in their early stages of participation, they may feel more like invited "guests" with little ownership of the process. While these factors do not preclude consumer involvement in Step Ahead or First Steps, it is important to recognize these differences and to understand the built-in barriers they create.
While the state has strongly emphasized the importance of consumer involvement, there has been little clarification of what that means, how it might look, or even who consumers are. For the most part, local councils and committees also lack a clear vision of or goals for consumer involvement. Without this clarity, consumer involvement remains a good-sounding idea with little or no form or focus. Councils and committees need to clarify the basic questions about consumer involvement--what it is, why it is valuable, who consumers are, and what it takes to involve them. While some councils and committees have had this discussion at least to some extent, others have merely acknowledged that "more consumers would be a good thing" but they have never talked through what this really means. Not only is it an important discussion to have at all levels, it is important to have it often. The answers to these questions appear to be constantly evolving as professionals and consumers experience and learn more about working together. Councils and committees need to determine their goals for consumer involvement-how, when, and why they want consumers involved. If a mandate by funders is the sole motivating factor in seeking consumer participation, the chances for meaningful involvement are slim. Are consumers invited for political reasons? to identify problems? to help determine more effective programs? to form policy? to evaluate progress? to measure satisfaction? to change attitudes? to become empowered? Determining why consumer involvement is wanted may suggest what kind of consumer involvement is needed. There are other questions that need to be wrestled with at both the state and local levels--hopefully with consumers involved in the discussions and decision making. Which consumer methods will work best for a particular situation? What is the process for consumers to join a committee? What is an appropriate balance between consumers and professionals or other community representatives? Who determines committee membership? Are there a limited number of slots for consumers? If a consumer attends a council meeting but is not a voting member, can that consumer participate in the discussion? What other avenues of consumer involvement might be appropriate? "With us going to these groups, what is that to eventually accomplish? What is it in the end?-or will this ever end?"
There is a major force at work in our country that is shifting the way we think about experts, responsibility, power, and how we work together. We are moving from technocracy to democracy, from expert to lay person. As we enter this new paradigm, it is not surprising that both professionals and consumers experience chaos and conflict as the old ways of doing things bump into the new. Not everyone is at the same spot along this path toward greater consumer responsibility and participation. And even when we have made a commitment to consumer involvement, our words don't always match our actions. The old ways of working are well-practiced and easy to slip back into--for consumers as well as professionals. Often, we don't have the knowledge or skills in place to successfully incorporate these new ideas. However, the "old ways" of operating create barriers to meaningful consumer involvement. Roles and responsibility The consumer's presence on a committee implies a role of expert, on equal footing with the professional. Lappé and Du Bois present a new model that is emerging in human services, one which challenges the old "professional as expert" model and redefines roles. The impact of this changing model has implications for both professionals and consumers, who may be at differing stages in this period of role transitioning. Consumers--as well as other committee participants--need to have a clear understanding of their roles and the roles of other participants. How are the consumer and professional roles currently defined by the consumer? by the professional?
THE NEW MODEL EMERGING IN HUMAN SERVICES
-The Quickening of America, Lappé and Du Bois, 1994 "I think all of us probably are struggling with going to new meetings and figuring out where we fit in-and they're trying to figure out how we're going to fit in. It's really a 'getting to know you' kind of thing. Are we there as a watchdog? I think it's a learning process--at every meeting we attend, they're finding out we're not watchdogs; we're not there to criticize, we're there with them. I think that's what they're just learning." Some consumers in the project commented that they needed to be careful to make sure they identified themselves as parents, rather than as being affiliated with another organization either through employment or volunteer work. Otherwise, they felt, their voices as parents became harder to hear. Attitudes and beliefs The attitudes and beliefs of professionals and parents alike affect the quantity and quality of consumer participation. Both professionals and consumers seem to be struggling with what they believe about consumer involvement. Some of these beliefs can create barriers. When asked how likely the possibility for active consumer participation on their Step Ahead committee was, the answers from committee chairs ranged from "highly likely" (1) to "likely" (2) to "somewhat likely" (2) to "not very likely" (2). While these beliefs do not necessarily correlate directly with actual consumer participation on committees, they do imply a wide range of attitudes towards involvement. Groups say that they want consumer involvement and that they value parents' opinions, but the experience of parents is often very different. Many have been "invited in" to these groups only to discover that their voices still are not being heard. If we believe in meaningful participation, how much listening--and changing--are we willing to do? Consumers, too, are challenged by their beliefs. They have long been told to "leave it to the experts." Now they hear that they are the experts. Some consumers may question if they really have expertise, while others struggle with what "legitimizes" them. Meanwhile, those who do believe they have something to offer and have had negative experiences remain skeptical of opportunities for meaningful involvement. "Are we enough by ourselves?" "Parents get the message from the outside world that they're 'just' a parent--they tend to want to find some kind of more professional hat to describe themselves to give them validity." "You know, maybe I was too harsh in saying, 'Gosh, I was waiting to be welcomed with open arms,' and 'Yea! A parent!' and 'What would you like? . . .' What I just said about systems change is going to be hard for agency personnel and here I am with high expectations in saying that, you know, I didn't feel welcomed. Well, gee, why didn't I? So if I just look at it that way and be really persistent, it's going to happen eventually . . . " "Everything that we say is included in the minutes--things that I said are in here, so I feel like I'm an equal partner." The provision of stipends is often raised as a means to increase consumer involvement. The consensus of consumers in our project seemed to be that most appreciated receiving a stipend, but that it was not what held their participation. The stipend did, however, appear for some to function as a confirmation of the belief that their involvement was valued. "[Getting the stipend] was nice; it was a motivator. Even though it was small, it gave value to that person's job-you valued us so much that you paid us to come--our opinions were worth something." "I would have done it whether there was a stipend or not. The stipend was appreciated because I didn't count it as my work time. . . . And I really do think a stipend makes a participant feel like they are valued. I really do. And it doesn't matter if it's a ten dollar stipend or a twenty dollar stipend--it's that you know that that person is taking time out, and probably, yes, taking extra time reading materials at home or doing something extra, and that you value that time." Power and authority A new understanding of power gives consumers a stronger, more authoritative voice in the planning process. "My perception is seeing these very strong organizations and how powerful their professional people are and how much they influence . . ." "[I'd like to] role play-let's pretend you're in power and I'm not." "How can we look at people that have power and break down that barrier between us?" "They think of parents as just young, uneducated people . . . they don't move forward as the world is moving. They're back here still trying to run the show and they don't understand they can't do that anymore . . . They feel threatened . . . because the parents have got enough power now to say we don't want to do it this way, we want to do it another way. And we mean it." Mathews (1994) writes about an early twentieth-century organization theorist named Mary Parker Follet who argued that "power can be either one--directional 'power over' or interactive 'power with'" (p. 143). Consumer involvement draws its strength from the latter. We are currently beginning to redefine power, moving from what Lappé and Du Bois at The Center for Living Democracy suggest are the traditional perceptions of power--such as force, money, "connections," race/privilege, law, or position (power over)--to what they term "enabling" power (power with). When power is equated with control, it "strengthens some at the expense of others, dividing what already exists;" when power is viewed as enabling, it is "mutually expanding" and "builds on the capacities of all involved." According to Mathews (1994), there are many kinds of political power and it always flows in more than one direction. "Even those who have no formal power have other types of power to bring to bear on 'the powerful.' . . . From this perspective, the only true power is the power people create themselves" (p. 142). "True power," argued Follet, "is rooted in our individual capacities . . . Power has to be grown, and it grows out of people's experience, knowledge, character, and, in politics, out of their associations or ways of relating" (p. 143). Consumers struggle with these issues of power. They seek to create their own power and often run into barriers when others operate out of "power over" systems. The following is a conversation that took place at one of the consumer meetings. "It's validating being a parent and knowing that you know more than the professional about what's needed for your children. The validating is important." "I think it has to come from the inside though." "But if you go to a meeting and the professionals that are there turn you off, shut you down-which they can-then it doesn't make any difference. If you have enough experiences like that, then you begin to feel, well, I'm just a parent, rather than I'm a parent and therefore I have some knowledge." "It happens with teachers; it happens with doctors." "It happens if you let it happen." "I think it can be done to you, especially if you're beginning, just starting to access professionals. I think that, unless you're extraordinary, you get shut down and its hard to know how hard to push."
The actual experience that consumers have in council or committee meetings can be a barrier if it contributes to the cost rather than benefit side of the social exchange theory.
A welcoming meeting atmosphere sets the stage for positive consumer involvement. Early impressions can make a big difference in whether a consumer feels welcomed. It just makes sense-and almost goes without saying. Yet consider the contrast in the dialogue below, where two consumers describe their first committee meeting experience. "I did feel welcome. People were very friendly; they made a point to welcome me. The chair made it a point to introduce herself, showed me a seat and put out my name. All those things kind of make you feel like you belong there. You walk in there and look all around and immediately its like . . . help! But I didn't have to do that because everyone was very good about coming over and making me feel welcome. That was real important. That took care of the first barrier for me. It was a big table, lots of people, but I think that the subject matter also helped--because it was part of my life so I felt very comfortable with it. And also people were very good when they were explaining something and I didn't understand it--and I had to do this a lot--I didn't understand some of their terminology. I interrupted and asked them, 'what does that mean and how does that work?' And the thing that was good was no one rolled their eyes--they gave me the information I needed to be part of the discussion. Part of what I felt was, gosh, I'm at this meeting and I don't know what's going on here. You're kind of stuck in the middle of something, and the fact that they're willing to explain and bring me up to date was very helpful." "I'm the opposite of what she said. I didn't know what was going on. I felt like I'm just going to sit here--I was way back in the corner. I thought I was on the other part of the room and everybody was right here and I didn't know anybody and nobody made me feel welcome there. They always talk right over my head and then I'll try to catch in on this and catch in on that and I asked a couple of questions. Everybody was talking all at once and I thought they was arguing with one another. No, I didn't feel good. I'm totally opposite of what you said. Everything. But, you know, I still plan to go, and it will just take a little time. Usually I can go to something and it will take just a few times, but this is taking a little longer; but I'll hang in there cause I love challenges so I'm going to go back." Consumers need to know--and understand--the purpose and goals of the committee or council they are joining. Why is this committee or council in existence? What is its purpose? What are its goals? Where are they heading? How are they going to get there? Consumers need the assurance that they are there for a reason, that their contribution has meaning, and that their time is being well spent. "The one thing that frustrated me--I had never seen the goals and objectives of the committee." "So, do they have a map? How do they break it down? I mean, how do you know what you're doing is reaching the people you want to reach?" "When I join a committee, I need someone to tell me exactly what they expect of me, what I have to do, and what they want for the outcome. That's what I need. That's why I felt very dysfunctional on Step Ahead, because I haven't figured it out--and I think I'm in company with a lot of other people. But I don't function that way. It just confuses me." Consumers need communication, clarity, consistency, and contact concerning meeting times and locations. Some committees seem to exist in name only. They meet rarely or not at all. Consumers who find themselves on nonfunctional committees may quickly lose their motivation for involvement and rightfully begin to question the credibility of the organization and how much their involvement is really valued. "[The committee I was supposed to be on] either never met or never told me about a meeting." Written communication or direct contact between meetings is helpful. Consumers often need to know dates well in advance so they can arrange work or child care schedules. "I know you said like the third so and so, but it really does help a parent to have that letter in the mail to put up on the bulletin board. I'd appreciate that." "I left work, went to the meeting and it was cancelled; went home and the message was on the machine --it had been called in after I left for work that morning. But I also haven't been getting any mailing whatsoever from them." "Apparently they had called a meeting in between the last one and hadn't gotten ahold of everybody because they had minutes from it." "No mailings, no contact, no phone calls, no nothing. Last time I saw {the committee chair] was three months ago." "It doesn't have to be a meeting. Even a phone call to let me know, to say look, we're working on this, would you care to make these phone calls?" "I went to the large meeting and heard a committee report from the committee I signed up for a long time ago, but I never was contacted about any kind of meeting--so who did this work and when?" Clarity and consistency of meeting times and locations are also important to consumers. "I read eight o'clock and thought, gee, eight o'clock on a Friday night is pretty late for a meeting." "I see the changing times and days of committee meetings as a problem cause I get terribly confused. They had second Friday at eleven in the first letter I got, and then they went to Thursday in the afternoon, and I had that other time and day stuck in my brain." Many consumers are shut out of meetings if they are scheduled during regular working hours. In St. Joseph County, 63 percent of females with children under the age of six are employed. For women with children from the ages of six to 17, the number jumps to over 78 percent, or almost four out of every five mothers; close to 70 percent of homes have all parents who are present in the household working. While some of these jobs may offer the flexibility needed to attend daytime meetings, most do not. "I got a new job, so I couldn't attend meetings anymore." "I really wanted to go to that meeting, but I couldn't get away from work." We asked consumers what other suggestions about consumer involvement they would give to committee chairs. Their responses:
In order for consumers to fully participate they need information. Information gives people the ability to decide and to act. Creighton (1981) distinguishes between public involvement and public information. The purpose of public involvement, he says, is "both to inform the public and to solicit public response regarding the public's needs, values, and evaluations of proposed solutions. . . . People cannot evaluate alternatives unless they have been adequately informed of those alternatives and the consequences of each" (p. 4). This need for informed participation has been recognized since the days of Thomas Jefferson, who wrote in 1820, "I know of no safe depository of the ultimate powers of the society but the people themselves. And if we think them not enlightened enough to exercise their control with wholesome discretion, the remedy is not to take it from them but to inform their discretion" (Creighton, p. 15). Boyte (1989) suggests that the emerging "information age" offers new possibilities for a wider, more active democracy. He cautions, however, that "Effective citizen action in our times is possible if--and only if--citizens develop the abilities to gain access to information of all kinds . . . and the skills to put such information to effective use." He also emphasizes that knowledge itself is a resource "that needs to be shared, shaped, and governed by the political community of citizens" (p. 5). Creighton (1981) defined four elements that are essential to broadened decision making:
Consumers in the project made it clear that they both needed and appreciated receiving information. They asked for:
"They want to include parents, but do they also want to educate parents? And if they do, then they aren't doing it." "They don't have anything to read, and if they did, it would have to be, for somebody in my position, a one-page, this is our goal, this is who is involved, this is what we're looking at now. It took me a while to figure it out, and actually I figured out more through our consumer meetings than from actually going to the other meeting."
Consumer involvement is more likely to increase when people have heard about Step Ahead or First Steps, understand what they are about, and are aware of decisions that need to be made. Publicity about Step Ahead and First Steps is needed on both the state and local levels. Few consumers know about Step Ahead or that they can become a part of First Steps or Step Ahead Committees. Some may be interested in participating, but simply do not have the information they need to become involved. Others may hesitate to commit their time and energy if they have never heard of the initiative. In addition, when people are not aware that decisions are being made that may affect them, they do not know that they have a reason to participate. However, warns Creighton, once they realize that they have been left out of the process, "they feel doubly betrayed . . . because of the impact, and . . . because they weren't told about the impact before the decision was made" (p. 43). Publicity needs to be provided in a variety of forms in order to reach deeply into the community-from billboards and bus signs to radio talk shows and visits to neighborhood council meetings. Consumers who already participate in First Steps or Step Ahead are themselves an important vehicle to increase publicity. According to a recent Step Ahead survey, most families learn about services and programs via word-of-mouth from relatives, friends or neighbors. "Parents need to recruit parents." "Being encouraged to get involved--I wouldn't have ever done it if I had not gotten called and been told there are these committees and you can be involved in them as a regular person. And so I felt like I could then and maybe I knew that (I'm not certain I knew that) but I certainly wouldn't have know when they met anyway. But it's like someone wanted me to be involved, to the extent that I could." It is also important to consider the message. What do consumers need to know? How do First Steps and Step Ahead connect with the issues that are relevant to consumers, such as concerns about their own families or neighborhoods? "They've got to advertise if they want to get the community involved." "Nobody even knows nothing about it." "So the PR is very important. See, nobody knows about it. You're gonna have to reach people where they are." "Is there any literature in the dentists' offices? Is there anything in the schools? Is there anything anywhere that somebody would know?" "How do you get in touch? Is there a number you can call? Can you be a donator? What kind of roles can people play? Why is it important that you participate?"
Time--for both consumers and professionals--is a factor that affects consumer involvement. Time, certainly, is a major cost in terms of social exchange theory, and the time commitment for effective involvement may keep many consumers from participating. We found this to be the main reason among the few consumers we contacted who chose not to join the project. This lack of time is not surprising. In a recent Step Ahead survey to families, 14 percent wrote that lack of time available to spend with their families was one the biggest problems they were facing. If time is viewed as a high cost to parents, it becomes essential that they do not find the meetings they attend a waste of their time. Howell writes, "people need the assurance that their contribution to public meetings will receive a fair hearing and that time devoted to participation is well-spent" (p. 8). It also suggests that some avenues for consumer involvement need to be time-limited, such as surveys, focus groups, or specific project-oriented task forces. The demands on consumers' time can also be a barrier to regular meeting attendance. Consumers miss meetings for many of the same reasons professionals do. Additionally, for consumers who do not work full-time outside of the home, the responsibilities of taking care of sick children or household emergencies almost always take precedence over meetings. One consumer who initially committed to the project did not continue because her husband's grandmother became ill and could not be left alone. As the only person not working full-time, this consumer felt she needed to be there for her care. Two other consumers with seriously ill parents also withdrew from the project. Consumers who did participate missed meetings for such reasons as sick children, a hospitalized foster child, waiting for a plumber, and out-of-town trips. Many consumers who do work do not have job flexibility, so when meeting times are changed or moved around, they may be unable to attend. Others cannot always get away from their jobs. Consumers may also be more likely to change jobs, which then may interfere with their ability to attend meetings. "I wasn't able to attend the last two meetings--one I was out of town; the other I worked the night before and the meeting was early the next morning." "I couldn't get away--didn't have an aide that day. A couple of times they changed the meeting days and times and then I couldn't go." "I would have gone to some of the conference stuff . . . but it wasn't important enough to me to do what needed to be done--which is always a big deal when you're talking about evening or whole days . . . " "I'm also a little scared of getting drawn in too far and sometimes if you go to something like that [a workshop] and you get too excited and then you are in over your head before you know it. [My husband] has been very nervous about my being involved even in this, because we only have so much time and there's a lot that we do." It is important to note that lack of time on the part of professionals also contributes to involvement barriers. Council or committee chairs, who may already be stretched to their limits carrying responsibility for Step Ahead or First Steps on top of their regular full-time jobs, may have little time to focus on consumers.
It is more difficult for consumers to get involved when they lack self-esteem, communication skills, and participative experience. For most service providers and other professionals, attending meetings is almost always a normal part of their day-to-day routine. But meetings are not an every day occurrence for some consumers. They may worry about what they should wear, where they should sit, or when they should speak up. In some cases the barriers of the unknown, coupled with the effort to actually get to a meeting (transportation, child care, etc.) may be strong enough to keep consumers away, despite their good intentions, interest, and high commitment. Consumers who do attend meetings may never have heard of Roberts' Rules of Order, which some councils and committees follow. They may feel overwhelmed by Step Ahead or First Steps jargon or complicated funding streams--which can be intimidating even to experienced professionals joining these groups. If their self-esteem is low, consumers may not trust or give validity to their own experience or feelings. They may feel uncomfortable challenging assumptions or decisions. And a negating or indifferent attitude from professionals may further interfere with a higher level of participation. Without self-confidence, meeting skills, or positive reinforcement, the "cost" of attending meetings, as related to the social exchange theory, may simply be too high. A few parents in our group attended consumer meetings, but never made it to a Step Ahead or First Steps meeting. These parents contributed greatly to this project, enriched the consumer meetings that they attended, and brought an important perspective to the problems and goals of consumer involvement. Their voices would not only be an asset to Step Ahead and First Steps committees, they are critical to the process. We must not to lose sight of hearing from families who cannot or choose not to attend meetings, nor of addressing the factors that impede their attendance. "I only have a high school education." "What do people wear to these meetings?" "I have low self-esteem and I really need to work on that." "I almost didn't come to the workshop because I had a run in my nylons."
If professionals want meaningful consumer involvement, they need to be convinced that it is valuable and be committed to addressing barriers. Finally, consumer involvement is doable. But if consumer involvement is to become a reality, it takes above all else a belief that it is worthwhile and a commitment to make it work. Consumer involvement is not something that can be done once and checked off the list. It is an on-going process that requires time and energy for relationship-building, recruiting, training, and follow-up. Successful consumer involvement means a willingness to try new methods of outreach. It demands the sharing of information, a reallocation of resources, and a redefining of power. When consumer involvement is a priority--when it is a consideration in all aspects of planning and allowances are made for it, chances are good that it will be realized. "I never made an active effort to reach [my committee chair]. I introduced myself and told her I was going to be on the committee and was anxious to hear what we were going to do. . . . I only have so much time, and I have to decide where to put it. . . . I can't organize the whole committee . . . because of time and that's not my job."
Copyright 1994 by Sue Christensen and Ann Rosen. This report is based on learnings from the Step Ahead/First Steps Consumer Involvement Project which was conducted for the Indiana Bureau of Child Development, Division of Family and Children by The Family Connection of St. Joseph County, Inc., 132 N. Lafayette Blvd., South Bend IN 46601 - 219-237-9740. The report may be copied in part or in whole to further advance the involvement of parent consumers in agency and coalition planning and decision-making, providing credit is given to the authors and The Family Connection of St. Joseph County, Inc. Return to top of page | Return
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LESSONS LEARNED . . .
NEXT: III. Some Strategies