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The Character Of Personal EmpowermentA Discussion Paper For A Colloquium
on NOT FOR DISTRIBUTION Michael J. Kendrick PhD December 2004 © December 2004 Lex Frieden Publications Staff: Sharon Finney, Marisa Demaya, and Darrell Jones This paper was developed under Grant No. 18-P-91554/6-01 from the U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services (CMS). The contents do not necessarily represent the official position of CMS and no endorsement should be inferred. This paper is a draft for discussion purposes at the January 11-13, 2004 colloquium, “Unlocking the Code of Effective Systems Change,” and may not be reproduced or quoted in its present form. ILRU is a program of The Institute for Rehabilitation and Research (TIRR), a nationally recognized, freestanding rehabilitation facility for persons with physical disabilities. TIRR is a part of TIRR Systems, which is a not-for-profit corporation dedicated to providing a continuum of services to individuals with disabilities. *The Community Living Exchange Collaborative is
a program in collaboration with Rutgers Center for State Health
Policy INTRODUCTION People with disabilities seek to live their lives in the same fashion as people without disabilities; they are hampered in this quest not by their disabilities but rather by artificial barriers created by the cultural environment in which they live. Discrimination born of superstition, ignorance, and even paternal benevolence continues to impede progress toward a world in which equality is the norm. The social services system cannot eliminate all of the barriers that arise from society’s stereotypes and cultural norms but it can transform itself to empower individuals to live their lives with greater independence and autonomy. At the very least the system should not create additional barriers to full participation of individuals in all aspects of family and civic life. In this paper we examine the concept of personal empowerment in the context of the contemporary social services system, identify different levels of empowerment and the supports that enhance it and offer some illustrations of how those within the social services system can be more effective in supporting an environment that encourages this empowerment. Because consumer-direction and self-determination offer the most promise to date, the discussion examines the connections between personal empowerment and the program characteristics of successful consumer-direction and self-determination efforts. Personal Empowerment And Disempowerment In The Human Service Context Though the rhetoric of human services asserts that the human service enterprise is quite an empowering one, or at least that its practitioners are trying to make it one, the claim lacks merit in practice. This is not surprising since the concepts, categories and sensibilities affecting human services cannot be divorced from those of the broader society. The individuals that use human services programs are a comparatively powerless group in our society. They are acutely aware of this and many can articulate with great clarity how their experiences in the role of service users have been less than empowering. “My life should not be about 15 minute increments of service”, said one West Virginia individual. And a woman in Connecticut said, “I feel like a conduit through which the government passes money to professionals”. Planning your life around the availability of staff at the local home health agency virtually eliminates the flexibility others enjoy. Admittedly, not everyone has these perceptions or experiences but it is useful to consider the implications if their perceptions prove to be justified, even in part. There are actually many factors, both formal and informal, present in the human service context that contribute to the experience of services users becoming disempowered relative to their contact with human service programs. These typically include, but are not limited to, social devaluation, poverty, stereotypes and stigma, professional sovereignty, assigned roles, prejudicial beliefs and attitudes, vested interests, fears, limitations and institutional expedience. The origin of these factors is quite complex and difficult to unearth because much of what is disempowering may be done quite unconsciously. We must not deny these factors are operative simply because their workings may be obscure, denied or disguised. To simplify somewhat the question of defining what empowerment might be it is useful to consider the problem more operationally, and isolate the various dimensions of empowerment that most human services claim they promote and endorse. These typical empowerment dimensions include factors like the following: · Choice and control Any actions taken to encourage these attributes can be empowering and any actions that discourage these attributes will likely prove disempowering. The result is that empowerment/disempowerment is relative and not an either/or concept. Empowerment varies from higher to lower levels of presence and effect. This suggests that it may be useful to consider the concept of levels of empowerment. Levels Of Personal Empowerment If we consider the factor of choice and control in human services, we have to isolate the core aspects of it that we want to measure. One way to achieve this is to start by asking the question: is the individual who is using services actually able to make a significant difference, through his own actions, in the character of the services he is receiving? More precisely, of the many important decisions taken that result in the actual design and operation of a given service, how many of these are made by the person who is using the service and how many are made by others on behalf of the person? In order to evaluate this question, we need to be able to identify what the major decisions are that most affect the actual substance of what the person ultimately receives, i.e. her service. For instance, given that staff account for as much as 85 % of the total costs of services, the degree to which a given service user has decisive authority over who enters her life in service roles becomes one of these key decisions upon which we focused. By paying attention to who is making the actual decisions about services, we can distinguish who is actually empowered on matters of substance, and who is not. This is not all there is to empowerment, but it is a central enough vantage point on the exercise of authority and power that it shouldn’t be dismissed as being trivial, immaterial or irrelevant. It is useful to convert this standard of the degree of authoritative decision-making carried by the person into a continuum from low to high and clarify the extent to which empowerment is a matter of degree rather than a simple yes or no variable. This requires that we develop a scale of the levels of authoritative personal decision-making into a spectrum from low to high. If the scale is too refined it could become a matter of hair splitting about increments of empowerment, whereas if it is too simple it will fail to capture nuances. We start with a simple six level scale in which each level adds a greater degree of empowerment, as measured by the authoritative decision-making standard. Level One: This is a level in which the person makes no substantive decisions about his service. Level Two: This is a level in which the person makes no substantive decisions about his service, but in which he is routinely informed about the decisions others will be making on his behalf. Level Three: This is the level in which the person is routinely asked to give advice (i.e. is consulted) by the actual decision-makers about his personal service decisions. Level Four: This is the level in which the person begins to routinely make a significant minority of the substantive decisions about his personal services. A significant minority, in statistical terms, might range from 25%-45% of key decisions. Level Five: This is the level in which the person routinely begins to personally make a significant majority of the substantive decisions that constitute his personal service. A significant majority, in statistical terms, might range from 55%-90% of key decisions. Level Six: This is the level in which the person is so routinely making the vast majority of key decisions that he no longer believes that he has a meaningful empowerment issue. It is all too common that most people never see services, or service systems, that rise much above a level two or three. In fact, most people have never seen a level four or higher service though these do exist and are relatively easy to establish and maintain. What makes many people confused is that the empowerment rhetoric used by service systems makes it seem as if people have much more authority and power than they actually do. This is most obvious in the case of user involvement or participation that occurs largely in regard to comparatively trivial issues whereas the really authoritative decision-making still remains with people other than the person using services. This simple exercise helps clarify what is the actual relationship of service users to the substantive decision-making that affects their lives and services. It can also be helpful for the formation of alternative models of service design and operational decision-making that offer service users more empowerment. Even as a speculative exercise, the scaling is beneficial in giving more concreteness to considerations of empowerment. The same exercise can be carried out with other key dimensions of empowerment by establishing a continuum of achievement and specifying the points along the way. Given the probable multi-dimensional nature of empowerment concepts, measurements of multiple sub-factors will be needed. Equally, while empowerment is an important factor in human wellbeing and fulfillment, there are clearly other factors that need to be considered. Nonetheless, consideration of the overall concept of empowerment as a facilitator of improved life outcomes remains a valid human service concern. The Scope Of Personal Empowerment: Over What Does the Person Exercise Authority?
· Relationships The same can be said about the degree and scope of empowerment a person might prefer relative to how her services are configured. Many people have never seen services that are extensively empowering since they may be quite used to services that are largely designed for rather than with those who use them. In fact, many services that are designed by reasonably enlightened professionals can be quite effective and beneficial although persons other than the service user direct them. The point of this discussion, however, is to explore how much more beneficial, effective and empowering services can be when the user directs as much of the service as she prefers. It is quite possible that a substantial number of service models can now be devised and governed solely by the service user or in partnership with service providers. This requires that some allowances and supports be made for the specific difficulties in functioning or limitations that either may bring to the partnership. These options specifically require that either the service user/family/friends have undisputed authority to be the key decision-maker(s) with regard to all crucial aspects of service design and direction or that they share this authority with a formal service that assists with or hosts the personalized and autonomous supports. Contrary to the overemphasis in many models of the use of self-administered individualized support arrangements, many service users and families are loath to take on the role of managing services. This is why greater attention needs to be focused on models in which the service user has authority to exercise control of the support arrangement, but may choose to have the more burdensome administrative tasks performed by others. This model proved highly effective in the Cash and Counseling Demonstrations wherein existing service providers that have the infrastructure in place to handle such functions do the administrative tasks. Alternatively, competent and trusted individuals can undertake these functions more informally if the individual prefers. The same arrangements are possible and functional in projects in which the service user or family member govern the service, at an individual level, as well as collectively, at the overall service or project level. The latter type of collectively consumer/family governed models are more scarce at present, but quite functional nonetheless. It is important to be clear about what aspects of services the person has authority over since this helps reduce disputes and provides clarity on responsibilities. The full scope of the individual’s authority normally includes the following key constituent elements of what makes up a service: · Goals In order for an individual to function as she wishes, she may require support with activities and functions for which she has limitations. People can be thoughtlessly “dumped” into responsibilities and tasks that they cannot yet, or possibly ever, perform with sufficient competence, albeit with the best of intentions. Guiding one’s life and services can bring with it many diverse demands that may simply exceed what a given person can manage well at a given moment. Naturally, such instances can lead to failure to hold up one’s end of the new empowerment arrangement. Such support failures are not a failure of empowerment per se but rather reflect a model of empowerment that is negligent in providing people with what they need in order to be successful. Often, this is seen in instances where service providers overlook the specific needs and vulnerabilities of people. Such models often presume that providing support where it is needed will inevitably reduce the person’s independence and threaten their autonomy. This need not be the case since needing support is an ordinary human condition; most people are both dependent and interdependent on others. At the same time, a failure to deal with the responsibilities of empowerment may result in the individual’s being judged negatively for shortcomings that could have been avoided if the proper supports were available. Aspects of personal functioning and oversight of services that may require some kind of personal support for the person to perform well can include any of those already mentioned. Examples of common supports that might help strengthen the capability of people to do well in empowered contexts include: · Support with decision-making There are many ways in which empowerment supports can be developed and put in place before they are needed. This is more likely to occur if those who advocate for greater empowerment are more realistic about what is necessary to take advantage of genuinely empowering opportunities. This requires that there be greater awareness of the specific limitations of people in addition to the areas of life where they function very well. By targeting and personalizing supports people will only get the support they need and the risk that they will be unable to succeed will be greatly reduced. Some (Briefly Described) Examples Of Key Ways In Which Managers, Agencies And Systems Can Support Greater Personal Empowerment There are no silver bullets that will enable personal empowerment
to be a more everyday experience for the users of present services
but there are many strategies that if combined and pursued with
some determination will make a measurable difference and help transform
consciousness in the process. They are described very briefly here,
not as a comprehensive treatment of the subject, but rather as useful
suggestions for pursuing practical results with empowerment. People tend to perform better when they have a purpose and resolve to adhere to it. Agencies and systems that lack empowerment goals do not do well with this issue. On the other hand, faithful and conscientious work with a goal of empowerment rarely leaves people without progress. Learn To Share Control And Authority With People Holding on to an exclusive monopoly on control, power and authority, even unconsciously and unintentionally will not advance the empowerment of people whose lives are shaped daily by that control. We can learn to share these capacities so that they are more likely to be used in ways that are sensitive to the needs and aims of people who have experienced comparatively more powerlessness. One way to share control and authority that can be meaningful and transformative is to establish an advisory board or task force which differs from the many other task forces in that it includes a substantial number of users of services and other advocates who have authentic power to influence policy, service delivery and evaluation of services. Refuse To Act As If You Know Best It is unlikely that an attitude of it’s my way or no way will help others experience a measure of personal empowerment since it precludes ideas, solutions and leadership coming from others. On the other hand, a determined willingness to relinquish one’s paternalism in favor of welcoming the contributions of others will be significantly more enabling. Consciously Restrain Vested Interests That Might Negatively Impact On Service Users’ Potentials There are always opportunities and temptations present to indulge our own vested interests whether they are power, size, empire, reputation, wealth or any other largely self-serving aim or appetite. On the other hand there are also always opportunities present to defend, expand and enrich the interests and needs of people in client roles. When users of service have an authentic role in the directing the systems that affect their lives, it is much more likely that the focus will remain on what is in the best interest of all concerned. Avoid Token Or Symbolic Gestures Towards Empowerment The involvement of service users in a widespread and systematic way to accomplish empowerment is one thing. To highlight selectively isolated examples of successful empowerment in order to create the impression that empowerment is routinely the case is quite another. On the other hand, to use such examples as a sign of what is possible if the organization gets more serious about the task would be a welcome kind of leadership. Recruit And Promote Managers And Service Leaders Who Are Empowerment-Competent Being able to effect valid empowerment results on the ground is highly dependent on having people in key roles that have the right personality and competencies. There are definite empowerment competencies and it is useful to name and define what these are. Naturally, the service users have their own instincts about who these people might be so inclusion of these users in the selection and supervision process would be sensible. Be sure to include the current and future CEO’s in the pool of people who need to be empowerment-competent. Provide Varied Opportunities For Service Users, Staff, Board, Funders, and Involved Others To Expand Their Empowerment Horizons People cannot be expected to embrace and implement visions that they have not yet had. On the other hand, people do respond to and rise to good and inspiring examples of what can someday be. In order for this to happen it requires that there be some intentional “vision and people building” experiences that act as a developmental opportunity to “stretch” one’s sense of what the real potential of empowerment might be. “Keeping the bar” too low will only suppress and delay progress, whereas raising it acts as a catalyst. Foster Ties To And Cooperation With Independent External Advocacy People will not consider themselves liberated or empowered if their voices are ignored or if they are cut off from powerful allies that might help them uphold their own vision and priorities. Keeping service users silent and isolated from independent advocacy that is fearless in its ability to attend to contentious issues does not equate with empowerment. Empowerment minded agencies need to see and support the important role that independent advocacy can play. An atmosphere in which the liberal expression of dissidence is routine is usually a sign that people do not feel threatened or intimidated by the prospect of disagreeing with people in roles of authority. Naturally, sometimes what they say is useful and productive and it is good that this be recognized. When people are testing out their autonomy and ideas they may not always express themselves with great tact and diplomacy but with practice most people do get more proficient. Avoid Structures And Practices That Undermine Service User Empowerment There are aspects of most current systems that can take on a life of their own and inadvertently take personal power away from staff and service users alike. Often, these begin with practices that are prescriptive, exclusive and driven from the top down; these practices pre-empt otherwise feasible service user choices and prerogatives. Impersonal structures are disempowering since they help create roles, identities and expectations that disadvantage service users. At the same time structures that are deeply attentive to empowerment issues can enhance it. One highly charged issue that especially benefits from straightforward intentional discussion and decision-making is “risk management” since service users and advocates may have significantly different views about what constitutes risk and the level of risk that is acceptable. Even when most other structures that support self-direction are in place, the presence of just one fearful “professional” who is not willing to allow the service user to take a risk can destroy the entire attempt at autonomy. Avoid Myths That Obscure The True Workings Of Disempowering Practices In this age of expertise with deceptive spin it is very tempting to use rhetoric and persuasive language to deny or conceal practices that are disempowering. However, that same skill can be used to better name and define optimal empowering practices to challenge those that are not. Misleading and self-serving ideas, oft repeated, will in time come to be taken for truth unless they are exposed for what they are. Empowering organizational leadership needs to opt for truth rather than myth. Make Efforts To Relieve People Of Their Fears Of Reprisal, Change And Uncertainty Fears of change, reprisal and uncertainty are ever present and can act to hold people and organizations back from their potential. These dampening fears can be faced and overcome if people are sufficiently supported in the process. The release of these fears can unleash all sorts of energies that can be focused positively since they are no longer diverted to maintain people’s mistrust, insecurity and anxieties. Often what we fear has no basis, but if a basis is discovered, then valid efforts at its removal are very reassuring. Properly Support People With Their Struggles For Empowerment As has been already mentioned earlier in this paper, many people may require targeted supports in order to fully realize their empowerment potentials. Providing empowering opportunities may not, by itself, be sufficient to assure empowering outcomes since it presumes that all that was lacking was the opportunity. Being attentive to what may be needed beyond the opportunity assures better outcomes. Be Comfortable With The Messiness Of Empowering Participatory Processes Once we open the door to participation, we begin to share the public space with others. People do not usually fit easily into someone else’s preferences and notions of how participation ought to unfold. On the other hand, being relaxed and at ease with a more open ended approach to how participation might express itself allows others to both shape the experience and make their own unique contributions. The prospect of being part of a process for shaping one’s own empowerment or assisting with that of others is by no means a straightforward matter as there are many things to consider and act upon. This paper is intended to set forth some thoughts about nurturing empowerment in the hopes that we can make very positive contributions to the process of infusing more empowerment into our social services systems. We should remember that people will normally provide many indications of what they experience as empowering or not, so none of us are left without a way forward if we can learn to authentically and respectfully partner with people.
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The Technical Assistance Partnership is sponsored by the Centers for Medicare and Medicaid Services to provide technical assistance to Real Choice Systems Change Grantees. The complete ILRU Web site was developed with support from grants from the Department of Education. However, its contents and the opinions expressed do not necessarily represent the policy of the Department of Education, and no endorsement by the Department should be assumed. ILRU is a program of TIRR (The Institute for Rehabilitation and Research), a nationally recognized medical rehabilitation facility for persons with disabilities.
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