Although the concept of person-centered services has gained much popularity, there are significant discrepancies in the extent to which service agencies are actually implementing it. Eight organizations, each of which was successfully providing person-centered services to at least some individuals, were examined. Some agencies were implementing the approach with significantly higher proportions of individuals receiving their services than were others. Interviews and participant observations were used to examine how the various organizational contexts contributed to these differences. Some organizations were found to be well-suited to the approach, whereas others posed significant limitations to the number of individuals who benefited or the rate at which they were likely to benefit from this approach.
Agencies serving individuals with developmental disabilities across the United States have adopted the goal of providing person-centered services (Bradley, Ashbaugh, & Blaney, 1994). The approach evolved from a history in which disability- related services have categorized, segregated, and restricted the lives of individuals. Person-centered outcomes focus on promoting capacities and preferences of individuals and creating opportunities to live, work, and socialize in typical ways (O'Brien & Mount, 1991; Smull, 1989). Studies of promising practices have resulted in the identification of desirable outcomes, namely, the following criteria:
Getting to know each individual is emphasized through spending time with them in the community and gathering information from the person and significant others.
People with disabilities live in homes or apartments that are not agency-operated. They might own or rent the place themselves, cooperatively own or rent the place, or share a place that is owned or rented by a family member or another person of their choosing.
People with disabilities choose whom they live with (the particular people, the number of people, etc.), where they live, and the people who directly support them.
People with disabilities work in a variety of typical community jobs and receive competitive wages and work benefits.
Levels and types of supports are flexible, not tied to particular settings, and can be adjusted if the person's needs change.
Supports offered by agencies are based on individual's choices, culture/ethnicity, age, and lifestyle.
People with severe disabilities are served and supported adequately in the community.
(Choice can be shown directly, by indicating a preference before a decision is made, and indirectly by expressing happiness or satisfaction with a decision. It also means that if the person is displeased with a decision, it will be changed, including decisions about where he or she lives, works, and who provides support).
In the effort to promote such outcomes, significant attention has been directed at the development of new policies and funding practices, including self-determination, a promising approach through which individuals directly control their funding (Bradley et al., 2001; Nerney & Shumway, 1996). Though changes in policy and funding practices are necessary, relatively little attention has been directed at organizational issues. Organizational change, however, is essential because many individuals with disabilities will continue to rely on them for long-term support. Although the language of person-centered services lends itself to wide-spread adoption and surface level agreement about its importance, there are significant discrepancies in the extent to which service providers are actually implementing the approach.
Organizational efforts to adopt person-centered services involve a fundamental shift from compliance with regulations and program structures to action that flows from relationships with people receiving services and creative problem-solving (O'Brien & O'Brien, 1991). Organizations that have implemented this approach on a sustained and agency-wide level have leaders who are purposeful and cultivate new thinking among staff members, create dynamic and relational structures, provide opportunities for reflective action and problem-solving, and re-negotiate restrictive service patterns (O'Brien & O'Brien, 1991). A few in- depth studies have shown how the efforts of successful agencies were facilitated by contextual factors such as small size and compatible ideologies (Murphy & Rogan, 1995; Taylor, Bogdan, & Racino, 1991). There has not been an in-depth study of how contextual factors might inhibit or limit the development of this approach.
My purpose in this study was to compare agencies that have been successful on a full scale with those that have adopted person-centered planning on a more limited scale, thereby examining contextual factors that influence their efforts. Eight organizations were studied, all of which were successfully providing such services to at least some individuals. They were distinct differences, however, in the proportion of individuals for whom they offered such services and the proportion for whom they actively planned to support in this way. These differences were attributed to four dimensions of organization: agency characteristics, images of people with disabilities, images of organizing, and approaches to policy. The capacity to think about people with disabilities as having the right to typical life situations, to create structures that are dynamic and relational, and to negotiate or side-step restrictive policies on an agency-wide level depend upon existing conditions within an organization. Some organizations were well- suited to the approach, whereas others posed significant limitations to the number of individuals who benefited or the rate at which they were likely to benefit from this approach.
Each of the eight agencies selected to participate in this study met criteria (see above) for providing person-centered services with at least some of the individuals supported. Though this list of criteria refers to a range of services, the agencies varied in the types of assistance provided. For example, some provided assistance to people in their homes, whereas others supported individuals in their work lives. Whether an agency provided employment, living, or a combination of services, each generated individual outcomes that were equally innovative and personalized. At least some individuals in each agency were being supported to live, work, or recreate in typical community settings, with services that were flexible and based on individuals' choices and preferences. For example, Alternatives in Community Living supported Peter, who had aggressive behavior and frequent instances of psychiatric hospitalization, to move from a group home to a home that he rented with two friends who did not have disabilities. He was also supported to work at a local diner and to volunteer at a fire department, his long-time dream. Northeastern Community Services assisted an 11-year-old girl who was in a semi- comatose condition to live at home with her family. This involved 24-hour per day medical care. Though each of the agencies provided innovative and personalized supports to some individuals, there were distinct differences in the proportion of individuals for whom each agency was implementing this approach.
Initially, three agencies were selected to participate, based on such distinctions. One was striving to implement the approach for everyone receiving its services. A second agency was using the approach through several small projects. The third agency was implementing it for only a few individuals. Five additional agencies were selected for the purpose of refining distinctions between organizations.
Data collection was focused on the question, “What is associated with the proportion of person- centered services that an organization provides?” Using a qualitative research approach, I collected data through interviews, participant observations, and reviews of agency documents and materials over a 2.5-year period. I interviewed individuals involved in the development of person-centered services and those who had decision-making power in each agency. This included individuals receiving services, their families, and agency staff and leaders. Participant observations included attending agency retreats, organizational meetings, board meetings, and agency evaluations. I conducted and recorded as fieldnotes 84 interviews and 38 participant observations. Table 1 provides general characteristics and a summary of data collected from each agency. Pseudonyms replace actual agency names.
Data were categorized according to organizational factors that facilitated and limited the proportion of person-centered services provided in each agency. Distinctions between agencies were related to four dimensions of organization: agency characteristics, images of people with disabilities, images of organizing, and approaches to policy. These dimensions were used to distinguish the agencies by type. The concept of organizational types was originated by sociologists (Weber, 1946) to explain their attributes and differences and has been applied in studies of innovative disability service agencies (Biklen, 1985; Taylor et al., 1991). In the present study, a typology was created to highlight opportunities and barriers to person-centered services posed by the different agency contexts.
The agencies were distinct enough to classify them as three types: learning organization, smorgasbord organization, and innovative bureaucracy. The learning organization was expanded to include two subtypes: the ground up and conversion organizations. Whereas the learning organizations had developed or were actively moving toward supporting all individuals in a person-centered way, the smorgasbord was doing so for small groups of individuals; and the innovative bureaucracy, only in a few exceptional cases.
Credibility of this study was enhanced through a number of strategies. With the three initial focus organizations, data were gathered from a number of participants over a period of 2.5 years. This allowed me to cross-check information and gain perspectives about key issues through a variety of situations. Members of a research team who were involved in a broader study of innovative practices reviewed fieldnotes and conceptualizations as they formed. Finally, credibility was enhanced through recognition of the limitations of this study. I focused on organizational issues and did not directly address state-level policy, which has a significant influence on capacity for person-centered services. Furthermore, I examined the experiences and perspectives of participants in the beginning stages of developing person-centered services. The direction of these agencies over time is uncertain. Although the smorgasbord and innovative bureaucracy posed significant barriers, the typology was not intended to be predictive of an agency's capacity for this approach over time. For example, an agency such as the smorgasbord organization could develop capacity for greater learning and expansion of the approach over time. I did not assume that the four types represent the range of agencies that exist. (A complete description of this study can be found in Hulgin, 2001.)
The Learning Organization
Six organizations, characterized as learning organizations, were providing person-centered services for all individuals whom they supported or were actively moving in this direction. Four of them adopted the approach from the “ground-up,” whereas two did so through a process of conversion from congregate services.
The Ground-Up Organization
The four organizations that adopted person- centered services from the ground up were Impact, Lifestream, Opportunities Unlimited, and Pathways to Community. Because it was given more in-depth study, Impact was the primary focus, with supplemental data provided by the other three agencies. The ground-up organizations were unique in that they did not have a history of organizing to provide congregate or segregated services. They were founded to provide personalized services. With characteristics that provided a clear focus for this approach, the agency concentrated on “righting” the injustices caused by traditional practices and social conditions, organized in new ways, and shaped and sidestepped policy to meet their needs.
Two major characteristics of the ground-up organizations facilitated the development of person-centered services. Unlike any of the other types of agencies in this study, they were each formed for the purpose of developing person-centered services. Impact was formed under the umbrella of a broader agency designed to develop services that were more publicly oriented. Within that framework, Impact's mission was to offer community employment for individuals with developmental disabilities. The fact that the ground-up organizations did not have a history of providing congregate services left them open to adhere to a clear ideology and values. A leader at Impact stated, “I think there was a real advantage that we weren't kind of mired in the rehab way of serving folks with disabilities.” Second, agencies developed from the ground-up had the most consciousness and control over their size. Pathways to Community and Opportunities Unlimited capped their services at significantly low numbers of people, 19 and 9, respectively. Though Impact and Lifestream served more people, 250 and 100, respectively, they organized in ways (as described below) that allowed staff members to maintain a personalized approach.
Images of people with disabilities
With a lack of investment in segregated and congregate services, these agencies showed a critical awareness of its effects. They defined their work as not only providing person-centered services but undoing injustices that people with disabilities experienced from past practices and social conditions. Agency leaders and staff spent time learning about and reflecting on these experiences. They identified their purpose in terms of improving people's overall life conditions. In an external evaluation of Lifestream, staff members articulated the agency's role as “joining the people it serves to struggle continuously with six realities of their personal and social situation: poverty, clienthood, need for opportunities and reliable supports, help with personal challenges, isolation from people and associations, and important personal gifts.”
Images of organizing
In their efforts, leaders of these agencies gave considerable attention to organizational principles and strategies. A leader at Pathways to Community described his agency's approach: “Our agency is a community built on tradition, stories, and photo albums versus policies. It's about people.” More specifically, these agencies adopted innovative strategies related to form, roles, and organizational growth. Although organizational structure is typically hierarchical and built around clear definitions of responsibility and power, the ground-up organizations were more circular and formed through connective relationships. Connections were active between people making decisions about services and people receiving them, agency members and community members and other service organizations, such as schools. These connections provided a variety of avenues for exchange and an open structure for improving opportunities for people with disabilities. Agency leaders actively recruited staff members whose values and style were compatible with this nontraditional organization. As the leader at Impact explained, “with a certain kind of personality, I can see that it just does not work. Your work is not clearly defined.” Finally, given the commitment to stay small, but facing pressures to increase their influence, the ground-up organizations developed alternative ways to grow. Their efforts included sharing their learning and accomplishments, assisting other organizations through technical assistance, and developing related projects that did not involve direct support.
Although state level regulations and funding practices are often cited as one of the most defining influences on services, the ground-up organizations showed significant capacity to both shape and side step their influence. This is not to say they did not experience the restrictions of state policy. They were particularly struggling to support individuals with significant needs. Their capacity for decreasing the negative influence of policy was related to at least three factors: (a) their capacity to develop relationships and negotiate with policymakers, (b) openness in interpreting the limits of policies, and (c) efforts to develop resources outside of the service system.
The Conversion Organization
Two agencies, Alternatives in Community Living and Riverside Services, were categorized as conversion organizations. They were both in the process of shifting from operating group homes to developing services consistent with a person-centered approach. Alternatives in Community Living operated three group homes at the start of the study and closed one in the process. Eighteen of their 30 individuals were receiving person-centered services. The agency was actively exploring the needs of the 12 individuals who still lived in group homes and was open to alternatives. Riverside Services had closed 13 group homes in the 3 years prior to the beginning of this study and was supporting 65 individuals to live in apartments or homes of their own. The agency also provided segregated vocational/day time services and was actively seeking leadership to convert them. The capacity of these agencies for significant movement in this direction was influenced by a number of factors.
The conversion organizations had several characteristics that contributed to their capacity for change, including the lack of investment in a particular model of services, a desire for significant change, and a scope for change that was manageable. Both Alternatives in Community Living and Riverside Services were founded by family members and advocates who originally chose to operate the group homes as a positive alternative to large congregate settings. These founding members were open to critical examination of this approach over time. This was particularly the case at Riverside Services, where some individuals were experiencing behavioral problems to the point of being in crisis. Their situations were so serious that families and agency leaders were open to significant change. Alternatives in Community Living and Riverside Services had characteristics that made such significant change manageable. Similar to the ground-up organizations, Alternatives in Community Living and Riverside were relatively small. In contrast to the smorgasbord organizations and the innovative bureaucracy, these agencies were also relatively young; their history of providing congregate services was not extensive. At both agencies, change was heavily influenced by their connection to innovators within the field. For example, Alternatives in Community Living was located in an area that was noted for its concentration of leaders in community integration.
Images of people with disabilities
The conversion organizations were the one type of agency in this study that showed the capacity to shift, on a full scale, perceptions and beliefs about people with disabilities. Unlike the ground-up organizations, these agencies had the challenge of supporting new perceptions among members whose experiences were grounded in the practice of operating group homes. Directors promoted alignment between members' thinking and values and perspectives of people with disabilities through a process of asserting a vision, creating opportunities for learning, and channeling resistance into problem-solving. The effort included not only staff, but families and board members. Eventually, this led to an agency level shift in direction. Family members and staff of the conversion organizations attributed change to the values and direction set by the directors. They used words such as convictions and social conscious to describe what these leaders brought to the agencies. Similar to the ground-up organizations, the directors promoted new ways of thinking by encouraging staff members to read, hosting retreats and reflective discussions, and inviting outside consultation. In addition, the directors promoted a vision of the new approach by creating examples of person-centered services that brought conflicting assumptions and values to the surface. For example, they supported individuals with challenging behaviors who were thought to be in need of more restrictive settings to move from the group homes to apartments of their own. The messages put forth by these directors created a range of responses from members. For some, it was a confirmation of their values and ideas, similar to members of the ground-up organizations. For many, there was complete resistance. Both agencies reported a high degree of turnover during the conversion process. At Alternatives in Community Living, approximately two thirds of the staff left the agency, whereas an almost total turnover occurred at Riverside Services. Though most families chose to stay with the agencies, many associated with Riverside Services reported doing so only because they felt they had no other option. The effort to take members' concerns seriously and to create a constructive problem-solving process led to significant changes in these agencies.
Images of organizing
The effort to bring members' perceptions in line with the perspective of people with disabilities was accompanied by the effort to build coherence with organizational approaches. Several factors related to organizing influenced the capacity of the conversion organizations to develop person-centered services on a full scale. They included the establishment of a new foundation by replacing the group homes with a long-term commitment to individuals, building capacity through strengthening connections between individuals and their families and supporters, and allowing natural order to emerge from their work. In the process of change, many parents of individuals living in the group homes expressed concerns with providing stability in their sons and daughters' lives, stability that they had perceived the group homes to provide. In order to move forward, agency leaders were challenged to offer another source of long-term security—personal commitment. A key factor in maintaining this commitment was maintaining a small size. Alternatives in Community Living decided that instead of growing in number, it would spin off an organization. Riverside Community Services implemented “circles of support” as a way to organize on a small scale and maintain continuity and commitment in individuals' lives. They also worked to strengthen individuals' relationships with parents who had been distanced by the group homes rules and staff who had authoritative and limited roles. In the initial stage of closing a group home, both agencies automatically imposed their existing ways of structuring staff responsibilities onto their new work. For example, at Alternatives in Community Living, the group home manager became the coordinator for the same six people. Leaders at Riverside Services, who were further along in this process, found this structure to be unresponsive. One staff person explained, “People live in very different geographic locations and some needed significantly more support than others.” Over time, they developed a dynamic structure with loosely defined responsibilities, an approach that was consistent with the natural order of people's lives and relationships and similar to the ground-up organizations.
Leaders of the conversion organizations also took an active approach to shaping and sidestepping policy and funding practices through negotiation, creative interpretation of policy, and the development of outside resources. Their situations, however, were more complex than the ground-up organizations. They were challenged to gain support for closing group homes. Riverside was successful in securing a “cost neutral” agreement with the state, giving the agency the same amount of funding for person-centered services that it received to operate the group homes. Alternatives in Community Living was challenged by the fact that the agency was located in the same city as a state- operated developmental center that was closing. Therefore, there was much pressure to maintain group homes as an alternative to the institution. As people moved out of the first group home, the state made an offer to either purchase it directly or to support another agency to do so. After considerable thought, members of the agency decided to resist this and curtail the practice of segregation. The director successfully discussed this with the state official in terms of wanting to “return the home back to the community as a typical residence.” With both agencies, the directors' success in negotiating resources was based on framing issues in such a meaningful way.
The Smorgasbord Organization
Lakeview Services, categorized as the smorgasbord organization, was as successful as the learning organizations in providing person-centered services for some individuals. Ten people, each with significant needs, were part of a “pilot project” to implement supported living services. Several individuals were part of a project focused on friendship facilitation. They were being supported to develop connections to typical activities and peers according to their interests. Finally, the agency created a family support cooperative through which six families managed their own funding in the effort to keep their children with significant needs at home. On an agency level, however, Lakeview remained invested in a range of services in which people were congregated, segregated, and had limited control in their lives. Although the person-centered practices adopted by this organization did not influence agency-wide change, the initiatives were wider in scope, a formal part of the organization as opposed to the exceptional cases developed in the innovative bureaucracy.
In terms of agency characteristics, Lakeview Services was distinct from the learning organizations in that it was larger and had a longer history, among other factors. Characteristics that distinguished the smorgasbord organization from the innovative bureaucracy were the condition of its founding and the fact that it was private and parent-driven. Lakeview was founded in the late 1960s by family members of individuals who had disabilities at a time when public services, outside of large institutions, were limited. As an alternative to large institutions, the agency was formed to provide locally based, yet segregated educational services. Even as public services expanded, the organization strove to provide services and supports that the community and public disability service system did not. For example, even as funding became available for public school services, Lakeview maintained its stance of having expertise in supporting students with certain disabilities and continued to operate a segregated school. The agency used typical public funding streams as well as private funding sources to develop specialized services, such as counseling and vacation and recreation programs. With a variety of sources to utilize, the smorgasbord organization was creative in its funding practices. It was the first organization in the state to propose a new way of using public funds to provide intensive in-home supports. On the other hand, the use of private funds made the agency less accountable to public policy trends. For example, the innovative bureaucracy, which was located in the same state, was in the process of deinstitutionalization, whereas Lakeview had recently constructed a $6 million segregated school facility. Lakeview successfully raised $3 million for this facility from families, corporations, and private foundations. A history of high profiled family-based initiative in the smorgasbord organization was another characteristic that contributed to the mutual investment in person-centered and segregated services.
Though the learning organizations had a high level of parent involvement, there were important differences between these agencies. In the learning organizations, the focus was on individuals with disabilities gaining increased control over services, with parents invited to speak on behalf of those who did not communicate clearly. Leaders within these agencies paid significant attention to the difficult issue of distinguishing between parent and individual perspectives. As an agency that was parent- founded, the influence of parents in the smorgasbord organization was used throughout its history to gain public and state support for its efforts, whether or not they were consistent with public policy trends toward person-centered services.
Images of people with disabilities
Perceptions of people with disabilities in this organization were shaped by parental concerns with limitations in the public service system and “rejection from society.” The perception that people with disabilities could be protected and receive the support that they needed in segregated settings provided parents a way to manage the difficulties their children faced in typical settings. Providing a fallback for families when such efforts proved difficult was a cornerstone of pride for the agency. Although the learning organizations provided individuals the opportunity for life's basic experience, regardless of disability and social barriers, the focus on protection and remediation in the smorgasbord organization eclipsed opportunities to view individuals from this perspective. For example, in discussing a number of situations in which individuals with significant support needs showed increased well-being in the move from group homes to typical homes, agency administrators attributed their success to meeting special needs as opposed to meeting common human needs. The agency director attributed one woman's successful experience to the fact that it provided her the opportunity to have more control in her life. Rather than viewing this as an essential factor to life satisfaction, she explained that control was important for this woman because she was particularly resistive to authority.
Images of organizing
Two approaches to organizing shaped the smorgasbord organization's efforts. First, the agency maintained its position as expert and in control of meeting disability-related needs. Second, services were developed and implemented within relatively independent departments. These approaches were both facilitative and inhibiting of person-centered services. Mid-level managers and families were given space to develop innovative services, relatively independent of the agency's other practices. On the downside, the fragmentation of services allowed inconsistent approaches to coexist without open questioning or the level of examination that led to change within the learning organizations. Person-centered initiatives were not only contained by the way in which this agency was structured, but innovation was contained by views of the organization as being in control and as expert in relation to the needs of people with disabilities. The high level of uncertainty and time-consuming nature of developing person-centered services was viewed as risky in this agency. As one leader stated, “Taking so much time to do something is scary because it brings about fears of not being efficient. Ellen's first loyalty is to the organization. If she sees anything interfering with the organization overall, she'll shut down.”
Many of the initiatives to shape public policy in this agency were guided by family members. As noted earlier, their efforts facilitated the development of person-centered services as well as perpetuated the state's allocation of resources to segregated settings. The extent of their power was evident in the development of the segregated school. Although opponents of segregation appealed to the state to stop this effort, it was allowed.
The Innovative Bureaucracy
Northeastern Community Services was the only state-operated agency in this study. It was also significantly larger and operated one of the oldest institutions in North America. Though it had many of the characteristics of a traditional bureaucracy, this agency provided exemplary services in several situations. It afforded support to two sisters, each with significant needs, to purchase a home of their own. A single father was assisted in purchasing a home and making it accessible for his daughter, who used a wheelchair. Most impressive was the agency's success in arranging 24-hour per day medical care for an 11-year-old girl in her family home. This agency's efforts, however, were limited to exceptional cases.
Northeastern Community Services is a division of a state agency that operated services within a five-county region. Services included the operation of an institution and community-based services, supporting approximately 1,700 individuals in community services. At the time of this study, the agency was closing the institution and creating smaller, alternative settings than are typically developed in this process. The innovative bureaucracy had several characteristics that created barriers to person-centered services, including large size, pressures of being a public- or state-operated agency, and the pressure of closing an institution.
In addition to the significantly large number of people, many of them had challenging needs. As a state agency, Northeastern Services was considered to have ultimate responsibility for individuals whom private agencies determined too difficult to serve. Also, as a public agency, the innovative bureaucracy was directly responsible for the administration of funding and relied on it as a central vehicle through which to develop services. Although individuals supported by all of the agencies relied heavily on public funding for their day-to-day assistance, other agencies focused on creative financing as well as the development of natural supports, such as facilitating social relationships and community connections. The situations in which the innovative bureaucracy provided person-centered services were those requiring more creative financing than did natural supports. Each of the situations described above involved the nontraditional allocation and blending of funds. These situations contributed to the fiscal concerns of administrators. The pressures of deinstitutionalization also inhibited initiatives. For example, the agency brought in a national expert to lead a person-centered planning project. When asked about what came of this project, an administrator reported that “it fizzled, probably under the pressure of time and the incredible intensity of what was going on over the last three years.”
The innovative bureaucracy also had characteristics that contributed to its capacity, despite these barriers. It was located in a community known for its leadership in community integration, and many administrators and staff members had ties to these leaders. As one administrator noted, “So you begin to see that there was a deep-rooted connectedness in the values and philosophy. And I really don't think that can be overstated.” Another important aspect of this agency's connection to the community was the effort to build capacity for services outside of itself, inviting community members to participate in planning and supporting the growth of private agencies to do what it could not.
Images of people with disabilities
The needs of people with disabilities served by the innovative bureaucracy were defined, at an agency level, within the framework of funding patterns and programs. Individuals were categorized and served according to perceived level and type of disability. Those with significant needs did not typically receive services in nonrestrictive settings. The vision of person-centered services for an individual with significant needs was heavily dependent upon the involvement of a family member or advocate. Family involvement in this agency, however, was significantly less than in any of the other organizations. Many of the individuals receiving services from this agency had lived in the institution and had lost connections with their families. Their closest relationships were typically with staff members who had worked in the institution for many years and then transferred to community-based services. The views of these staff members reflected an institutional mindset. Some expressed concerns and resistance to people moving out of the institution, arguing for the maintenance of “structure and supervision” in their lives. The few individuals who received person-centered services in this agency were supported by family members who had maintained strong ties and vision. Families who were involved but held traditional views posed a significant barrier to innovation. Though administrators reportedly did not want to invest resources in the construction of new facilities, they were not in the position of taking such a stand. Unlike administrators of the conversion organizations, who were able to direct families who wanted this type of service to another provider, Northeastern Services was a state agency and could not do that. Most important, the size of the agency made it difficult to facilitate a process of discerning the preferences of parents from those of individuals receiving services.
Images of organizing
Distinct approaches to organizing within the innovative bureaucracy influenced the development of person-centered services as well as inhibited the organization's ability to make agency-wide change. With centralized decision-making, top level officials of this agency had direct power over the allocation of resources and were able to develop exemplary services. It was through the direct involvement of a top administrator that the agency supported a young girl who required intensive medical supports (24-hours per day nursing services) to live at home with her family. At the same time, centralized decision-making created an atmosphere in which most staff members were not free to respond to individuals' needs; they were left to defer to rules and regulations. With limited opportunity to ground practices in the perspectives of individuals and learn from this, efforts to make agency-level change could be characterized as superficial, wide-spread adoption of new services followed by periods of caution and conservatism. Such a cycle involved extensive use of Medicaid Waiver funds followed by a cut in fiscal spending.
In the innovative bureaucracy, more than any of the other organizations in this study, state-level policy was interpreted as imposing boundaries or limits that must be worked within rather than reshaped or side-stepped. Although administrators in this agency pushed limits, they also described public policy as a reality that limited the extent to which they could implement their ideals. Administrators described several instances in which their good intentions were thwarted by funding limits imposed by their central administration. One administrator explained that the agency was strongly influenced not only by state-level administration but by public perceptions. Similarly, another administrator expressed caution in his efforts based on perceived political pressures. This was particularly the case with the administration of resources such as the Medicaid waiver, which did not have clear regulations to govern its use. He explained, “There is not a clearly defined set of rules that guides the decision-making that I make and . . . there will be a day of reckoning . . . I mean, we're stretching the envelope and I don't know when the seam is going to break.” Operating with this nebulous sense of accountability, this administrator took the role of sole decision-maker when it came to spending. He stated, “nothing gets approved to spend any money that doesn't come here first, right down to hours of respite. I'm approving everything.” Although funding also posed limits in the learning organizations, there was clarity in these agencies about the compromises that were made. By openly naming the limitations to developing person-centered services, these agency administrators were in a better position to work through them. When asked how they handled having to make this type of compromise, the administrator concluded, “It's not always acceptable for the director to stand up and say that you are doing something for money reasons.”
In this atmosphere of vague pressure to act conservatively and the lack of an open forum for the compromises that were being made, both administrators confided that they were deeply frustrated at times by the significant limitations to their efforts. Yet, these leaders were able to facilitate exemplary outcomes.
Success in the movement toward person-centered services requires recognition of the contextual factors that influence its development. Although supportive policies and funding practices are essential, in this study I have illustrated the importance of considering the effect of organizational context. Each type of agency in this study brought a unique combination of factors that facilitated or inhibited their efforts, as summarized in Table 2. The development of truly person-centered services in each of the agencies, even the most traditional, is encouraging. The different opportunities and barriers that each type of agency showed for this approach, however, raises a number of cautions and considerations for those committed to change. These implications are raised in relation to policymakers and organizational leaders.
Implications for Policymakers
As state-level policymakers adopt the goal of promoting person-centered services, it is important to recognize that capacity for change at the organizational level will vary. The expectation that existing agencies will convert to this new approach, at least in the near future, is likely to lead to superficial change within those that have significant limitations. Effective policymakers must promote and sustain the development of organizations similar to the learning organizations in this study. Successful efforts will be led by people with disabilities and their families, promote coherence between values and organization, maintain a small scope, foster relationships and problem-solving, and have natural and evolving structures. Support can take the form of fiscal resources as well as working partnerships to create more responsive policy, as shown to be so critical to the success of the organizations in this study. To the extent that funding practices continue to be restrictive, success will depend upon the capacity of a particular organization to negotiate or side-step them.
Implications for Organizational Leaders
Early on in the development of supported living, O'Brien (1987) made the observation that although the approach was simple, it was at risk of being complicated by the experiences of service providers. This study shows the different types and degrees of challenges facing service providers in their efforts.
Though this study clearly shows the advantages of agencies that have certain characteristics, such as being small and not having a long history of operating congregate services, I also found that it is possible to develop truly person-centered services on a small scale in larger, more traditional agencies. In the effort to build coherency between the needs of people with disabilities and existing organizations, the change process must be reconceptualized. The understanding that person-centered services require a change in values and thinking as well as new organizational structures and processes has been translated into an expectation for existing agencies to transform themselves. Although conversion has become a popular strategic concept in promoting the move toward person-centered services, this study shows that only certain agency contexts may lend themselves to this strategy as it is commonly understood. With an increased recognition of the conflict between this approach and existing organizations, as well as the variety of ways in which conflict exists, there will have to be a variety of ways to approach change.
Recognizing inhibiting factors while drawing upon attributes will provide a guide for change within a particular organization. For example, in the smorgasbord organization, a key factor in the development of person-centered services was the freedom that mid-level managers and families were given to develop relatively independent projects. Should leaders of this type of project experience pressure over time to compromise their work as was seen in this study, they might work to establish complete independence from the agency. In the innovative bureaucracy, an attribute that contributed to innovation was its tie to an activist community. With such a high level of internal pressures, this type of agency may increase capacity through stronger partnerships with interested community members. Leaders of learning organizations, particularly those developed from the ground up, have the opportunity to contribute new ways of understanding organizations as they move forward.
In the midst of this era in which person-centered services are being enthusiastically endorsed, the service system is faced with the long-standing challenge of how to create change that goes beyond the surface to permeate the lives of people with disabilities. Although organizational context has been a relatively overlooked factor in efforts to promote change, this study shows its important influence. Most organizations will have the capacity for this approach to some degree; few will have the capacity to implement it on an agency-wide scale. As commitment to such outcomes grows in the latter type of organizations, more leaders and staff are likely to feel stuck, struggling with whether or not to leave the field. They are challenged to understand that the limitations lie not in their ideals or the system as a whole, but in the particular context in which they are attempting change. The challenge is to create alternative routes to change for organizations with limited capacity as opposed to expecting that they will simply convert to the new approach. Finally, along with these insights comes the realization that true change will be slow. Without consideration of these factors, efforts at change will result in the vicious cycle of history repeating itself.
NOTE:The author expresses appreciation to Steven J. Taylor for his advice on an earlier draft of this paper and assistance in conceptualizing the types of organizations. Suggestions provided by John O'Brien and reviewers were also thoughtful and very helpful. Thanks are also extended to agency leaders and staff, families, and individuals receiving services who participated in this study.
Author: Kathleen M. Hulgin, PhD, Visiting Assistant Professor, Department of Educational Psychology, 156 McGuffey Hall, Miami University, Oxford, OH 45056. firstname.lastname@example.org