Organizations are increasingly looking to convert from facility-based services for adults with developmental disabilities to individualized supports. Such conversion involves not only a change in services but a transformation of organizational culture. This qualitative study involved four organizations that have made sustained efforts to transform. Although the approach taken by each organization was unique, there were also some common strategies, which included generating commitment to common values and mission, a turn or return to authentic person-centered planning, shifting power and control, using community supports and relationships, moving away from facility-based settings, and nurturing staff engagement. Ultimately, organizational change is an ongoing process that requires organizational perseverance and commitment.
Since the 1980s, residential services in the field of developmental disabilities have experienced a shift toward more individualized, person-centered supports (O'Brien, 1994; O'Brien & Lyle O'Brien, 1991; Racino, Walker, O'Connor, & Taylor, 1993; Taylor, Bogdan, & Racino, 1991; Walker & Salon, 1991). Using the term supported living, O'Brien (1993) articulated some of the differences associated with this approach versus a traditional service system approach:
Supported living expresses a fundamentally different relationship to people with developmental disabilities than most other approaches to service do: instead of controlling people with disabilities in order to fix them, supported living workers seek to cooperate with people with disabilities in order to develop the assistance they need to get on with their own lives. (p. 1)
The purpose of this research was to identify some of the strategies used by organizations as they make this transformational shift from group homes to individualized supports.
Some organizations fall into the trap of making a surface change, such as changes in language or service types, rather than authentic, transformational change (Lyle O'Brien, O'Brien, & Mount, 1997; O'Brien & Lyle O'Brien, 1998; Smull, 2000). Others have engaged in efforts to create authentic organizational transformation that incorporates foundational, cultural change across the organization (Fratangelo, Olney, & Lehr, 2001; Fratangelo & Strully, 2002; Hulgin, 1996; Jay Nolan Community Services, 2008; Kendrick, 2009; Mount, 2010; O'Brien, 2008; Scott, Hasbury, & Wykowski, 2010; Walker & Salon, 1991). O'Brien and Lyle O'Brien (1991) stated, “Making the shift to supported living involves more than providing a different location or a different type of service. The shift requires organizing and managing systems and agencies in new ways. … In short, it calls for a new way of thinking” (pp. 5, 12).
Literature on organizational leadership and innovation has pointed to the importance of generating shared values and commitment to change, as well as the need for ongoing organizational learning (Brady, Fong, Waninger, & Eidelman, 2009; Kotter, 1996; Kouzes & Posner, 2007; Senge, 1990). In the field of developmental disabilities, a substantial body of literature exists on organizational provision of individualized supports. This literature highlights the need for separation of housing and support (Racino et al., 1993), a person-centered approach to supports (Mount, 1998; O'Brien & Lyle O'Brien, 1998, 2002; Smull, 2000), and supports that are creative and flexible and promote community connections and relationships (Bradley, Ashbaugh, & Blaney, 1994; Kendrick, 2008; O'Brien, 1993, 1994; Taylor et al., 1991).
Far less research has documented organizational change from traditional supports to individualized supports. The small amount of literature that does exist has emphasized the need for broad-based changes in organizational culture, shifts in staff roles and staff's relationships with the people they support, and shifts in power and control (Dufresne & Laux, 1994; Fratangelo, 2009; Fratangelo et al., 2001; Hulgin, 2004; Kendrick, 2009; Kiracofe, 1994; Meissner, 2011; O'Brien & Lyle O'Brien, 1991). Most of this literature was written in the 1990s, and only one study (Hulgin, 2004) was a qualitative research study. I identified no other qualitative research studies that focused on leadership and strategies for change in the field of developmental disabilities.
Hulgin (2004) investigated the ability of organizations to incorporate person-centered practices and found that organizational context (e.g., agency characteristics, images of people with disabilities, images of organizing, and approaches to policy) was a key factor. My research builds on Hulgin's work in that I investigated organizations that have engaged in efforts to shift their organizational context or culture to facilitate the provision of individualized supports. In the past few years, interest in organizational change has been growing, with an increasing number of organizations seeking alternatives to large group homes and intermediate care facilities for people with mental retardation and expressing interest in shared living and other similar forms of community support (Mount, 2010; New York State Association of Community and Residential Agencies, 2009; Scott et al., 2010). Thus, it is critically important for the field to have further current research-based work that documents the strategies of, perspectives of, and lessons from administrators of organizations that have engaged in efforts to transform from facility-based supports to individualized, person-centered supports.
This study is based on qualitative research methods (Taylor & Bogdan, 1998). A national search was conducted to identify potential organizations; the search included a request for nominations from national consultants, university research centers, national organizations, and national e-mail distribution lists. Nominations were solicited for organizations that had achieved “significant transformation” away from facility-based services. From among the nominations that were received, I selected four organizations for this study. Selection was made to learn about change from a diverse array of organizations.
A 2-day site visit was made to each organization. For the site visits, an interview guide was developed with open-ended questions; this interview guide helped ensure that the same general areas were explored with each participant and within each organization (Bogdan & Taylor, 1990; Taylor & Bogdan, 1998). During the site visits, interviews were conducted with 66 people (an average of 16 per organization). Among those interviewed were individuals who received support, family members, direct support staff, and administrators so I could learn, from a variety of perspectives and experiences, about organizational change. I focus, in particular, on the perspectives and experiences of administrators regarding strategies for organizational change. Thus, I draw primarily on the interviews with the administrators (21 total, or between 3 and 7 at each organization), who included executive directors, associate directors, program directors, and associate program directors. Organizational executive directors compiled the schedule of interviews, with attention to including participants who had involvement in and experience with the agency's work on transformation. Interviews were conducted at the agency offices. Most participants were interviewed individually, and a few were interviewed in small groups (e.g., two to four participants together). Each interview lasted between 1 and 2 hr. Interviews were tape recorded and transcribed, yielding approximately 15–25 pages of double-spaced notes per participant. Questions covered issues such as organizational history and background; what prompted the agency transformation; description of the organization's evolution; and perspectives on what the key strategies, lessons, and challenges were. Within these broad categories, most of the questions were open ended, providing opportunity to elicit participants' experiences and perspectives.
Data analysis was inductive, using the constant comparative method (Glaser & Strauss, 1967; Taylor & Bodgan, 1998) whereby data are simultaneously coded and analyzed. As a first step, the data for each organization were read and coded for themes. Next, potential themes for each organization were compared with those of other organizations to identify common categories or themes. Data across all four organizations and data within each theme were reread and analyzed to further develop these common themes. To help ensure credibility, multiple people were interviewed within each organization, providing diverse input regarding key organizational strategies. Second, a case study report on each organization was reviewed by the organizational administrators to confirm that critical issues had been captured.
Key Strategies for Change
The four organizations that were part of this study were Residential Support Options (RSO), Community Living Alternatives (CLA), Riverside Community Services (RCS), and Alternative Community Supports (ACS; all names of organizations and individuals are pseudonyms). A brief profile of each follows.
RSO provides residential supports to almost 2,000 individuals in a large urban area. RSO is located in a state that promotes self-determination and self-direction of services as part of state policy. Beginning around 1995, RSO began a transformation of its services on the basis of the principles of self-determination. Since that time, the number of individuals in licensed group homes has decreased from more than 1,200 to about 700; at the same time, the number of individuals living in their own homes has increased from 300 to almost 1,200. People choose where they live, as well as the staff who provide support. For example, Harry and Eleanor met when they lived in an institution. They were then transferred to different group homes. With the assistance of RSO, they got married and moved into their own apartment, where they hire staff of their choice on a schedule that they have determined. In the mid-1990s, RSO was dominated by a clinical model of services with 128 clinicians on staff. Their transformation has included moving away from such a large number of clinicians on staff and, instead, contracting for clinical services when needed.
CLA began its shift from group homes to individualized supports with the arrival of a new director in 1990. At that time, the organization had three six-person group homes. The organization has approached change one person at a time, with a focus on promoting better quality lives for the people they support. People in one of the group homes in particular were experiencing a difficult time living with each other, so this home was chosen as a focus for closure. The organization wanted to close this home relatively quickly but at the same time ensure that adequate time and energy were devoted to planning with people. The process of closure took 3 years and involved various consultants who assisted with planning and strategizing regarding the development of community supports. One of the individuals in the home was Jeff, who posed some challenging behaviors for staff. Extensive planning was conducted with a circle of support, and Jeff was assisted in moving to his own apartment with a community member as a housemate. Jeff and this housemate formed a close relationship and have lived together for 11 years; Jeff no longer displays challenging behaviors, and he has become well known in his community through his long-term involvement in various neighborhood and community organizations. The second group home was closed over the next 10 years, as various individuals raised an interest in moving. The third group home has three people remaining and will likely close in the next few years. In addition to this work on closure, since 1990 all new people who have come to the agency have been supported in individualized ways in the community rather than in group homes. Currently, the organization provides residential supports to 55 people. The organization has purposely remained small, because it values close connections and relationships across staff, individuals with disabilities, and families and fears that these would be jeopardized by too much organizational growth.
RCS provides residential support services to 160 people. The organization has been engaged in transformation efforts since the mid-1980s, beginning with the board's decision not to develop intermediate care facilities for those with mental retardation and to focus on smaller scale settings as opposed to larger ones (e.g., 4- to 6-person homes vs. 8- to 12-person homes then being developed elsewhere throughout the state). By the mid-1990s, this evolved into a commitment to develop individualized supports for new people, as opposed to group settings. In 2001, administrators decided to close a 10-person group home that had been established very early in the organization's history. They received a grant from the state Developmental Disabilities Planning Council to hire a consultant to assist with planning for people and to help with start-up costs for people in new settings. Within the year, everyone had moved to individualized support arrangements. By the mid-2000s, RCS recognized that many individuals whom they supported were growing older and that these individuals would likely face future institutionalization as their needs increased. RCS began working to develop supports and partnerships (e.g., with hospice and other agencies that support aging people) that would enable the individuals they supported to remain in their homes through the end of their lives if they desired. Although administrators acknowledged that this effort has used some of the energy that might have otherwise been devoted to further group home closure, their success with it has been a source of organizational pride and positive energy and has prevented institutionalization of numerous individuals. At the same time, RCS has continued to respond, when opportunity arises, by assisting individuals in moving out of group homes without then filling the vacancy in the group home; in the past 8 years, in addition to the 10 people who moved out of the 10-person group home, it has assisted 20 individuals to move from other group homes to their own homes. For example, when Steve worked in the group home where Matt lived, they formed a close relationship, which they maintained after Steve left to work in another group home. On the basis of their close relationship, in spring 2010 Matt moved out of the group home and into a house that he shares with Steve.
ACS began work on transformation in the late 1980s, when it closed one of its eight-person group homes. By 1990, they provided residential supports to 54 individuals who lived in 12 settings, including two other eight-person group homes. Within the following 3 years, the two group homes closed, and these 54 people were living in 32 settings. In the process of closure, individuals were interviewed to establish their preferences for where and with whom they would like to live. For the next several years, ACS focused on closing its sheltered workshop and day habilitation center. By the mid-2000s, ACS recognized that, although people lived in small-scale settings, most with one other person, there had been no accompanying shift in power and control when people moved from the group homes. So, beginning in 2008, the organization began working to assist people to increase self-direction in their lives through use of person-centered planning. This involved moves to new places for some individuals, as well as increased opportunities for home ownership and hiring staff for the specific hours and tasks that they need and desire. Kevin lived in his own apartment for a long time but always wanted to own his own home. Recently, the organization assisted him with purchasing a home and hiring his own staff. In the process of assisting him, the organization developed closer relationships with local housing organizations that will likely be helpful in assisting others with home ownership.
Each organization was unique in its specific approach to change. At the same time, there were several common strategies across organizations, including generating commitment to common values and mission, a turn or return to authentic person-centered planning, shifting power and control, using community supports and relationships, moving away from facility-based settings, and nurturing staff engagement. I discuss each in turn.
Generating Commitment to Common Values and Mission
A central theme among organizations that were working on transformation relates to the importance of establishing a clear set of values and a mission that serve as a guide for change. As one director commented, “It's important to know what your compass direction is; otherwise it's easy to get blown off course.” Likewise, another director offered that it had been important to have “a persistence about who we are, what we want to do, and who we want to be.”
A key feature of organizations working on transformation was to increase the visibility of the values and mission and the degree to which they were embraced by all staff. There were three main aspects to this: having deeper conversations among staff in the organization, exposure to national leaders, and developing new approaches to organizational planning.
These organizations felt it was important that they increase the time spent in conversations that reached beyond day-to-day business into broader issues related to implementing the values and mission. For example, one administrator commented, “It is challenging to not get caught up in the day-to-day aspects, and make time for this. We realize we need to continually make time for new conversations, deeper conversations.” In relation to this, they emphasized drawing a wide variety of people together for these conversations. As another administrator explained, “We have many more cross-departmental conversations where we wouldn't have before.”
The space for deeper conversations was created by carving out time from regular meetings, as well as setting aside separate occasions for in-depth conversation, such as special meetings or staff retreats. For example, the director of CLA explained how it selected a theme for the year, such as relationships, and scheduled a retreat as well as other specific workshops and discussions on the theme.
Exposure to national innovators
An essential part of transformation for all of the organizations was exposing themselves to others around the country and beyond who are engaged in innovative work. The organizations accomplished this by inviting key individuals to come and lead a workshop or a retreat, as well as offering assistance for staff to travel to attend national conferences or exchanging visits with other organizations. These opportunities provided staff members and the organization as a whole with connections to others who share similar values and an opportunity to learn about new strategies as well as reflect on their own work. One director referred to this as a means of “inserting ideas” into the organization. Another administrator commented, “One of the things we believe strongly is to be part of the national dialogue. So, we've always done that, in terms of getting people to conferences and bringing folks in.” This exchange with others has also helped energize agency staff and helped them gain a sense of being part of a national movement.
New approaches to organizational planning
Organizational administrators found that incorporating new approaches into organizational planning helped engage more staff in the organization's overall values and mission. Emphasis was placed on planning that was clearly connected to implementation of the values and mission and that was used as a guide for action.
Three of the organizations made changes to their strategic planning, drawing on others in the organization to help generate broader commitment and enthusiasm regarding the mission. One administrator recalled, “I realized the senior management group was not working well in terms of driving the strategic structure. There were others in the organization who were good strategic thinkers that we pulled in.”
The fourth organization began using an organizational PATH (Planning Alternative Tomorrows with Hope) process. One administrator reflected on this planning: “This has challenged us to think differently. It has given us direction, and has helped us map out where we are and where we want to go.” After PATH, this organization created Teams of Change (including administrators, direct support staff, and individuals who receive support) to incorporate ideas from PATH into action.
Promoting Individual Change: A Turn or Return to Authentic Person-centered Planning
When working on organizational change, the organizations that were part of this study found that simultaneously working on creating individual change was critical. A basis for this is person-centered planning and design of supports. Although the organizations in this study had considered themselves to be person centered before initiating a change process, they recognized the need to examine their planning approaches. For example, one administrator reflected,
It seems that our philosophy for a long time has been person centered, but it's hard not to get bogged down in the day-to-day work. We looked at our planning, and realized that it had become part of the regular, annual planning, and that most of the people involved other than the individual and family were paid staff.
Thus, all of the organizations had to orient or reorient themselves to more authentic person-centered planning. This reorientation involved two key aspects. One was that it entailed deeper forms of collaboration with individuals, families, and their community networks. The director of RCS described how this is not only desirable but essential for sustainability of community supports: “If I have to carry the commitment for people alone, I can't do it. The only way we can do it is in collaboration with people and families and circles.” A second key aspect was that planning not be driven by traditional services and funding. As the director of CLA emphasized, “You have to plan without preconceived notions. When you have preconceived programs or preconceived ideas about what people need, that doesn't always work.” Sometimes it is the provider who has preconceived notions; sometimes it is families and people with disabilities who have preconceived notions about what is available or possible.
Not Simply Smaller Settings: Shifting Power and Control
In the past, all of the organizations had created smaller settings; however, as part of this transition to individualized supports, it was important for them to recognize that, in addition to shifts in size, it was important to make shifts in control. After having closed three group homes, the director of ACS reflected, “But we didn't do a good job with circles and relationships; we kept all the power. So we'd say we were all about individualized support, but we were far from it.” An administrator of another agency also commented on the need for change in power and control: “This is not just a service change, it's a relational change, a power change, a difference of social order.”
As part of their transformation, organizations in this study assist individuals to have control or shared control of their housing (e.g., home ownership, signing a lease, shared decision making about a home). Individual budgets are another means of increasing control by people with disabilities. Only one of the organizations, RSO, was located in a state that used individual budgeting. The other organizations in this study developed informal individualized budgets within their organizations for purposes of person-centered planning and individualized support.
Additionally, all of the organizations made changes in staff hiring, so that more staff are hired to support a specific individual rather than a group, thus giving the individual much greater choice, input, and flexibility regarding who is hired, what they are hired to do, and their work schedule. For example, an administrator at RSO commented, “Individualized staffing, when possible, creates a more personalized support situation.”
Using Community Supports and Relationships
Organizations that are transforming to a vision of supporting everyone in the community have recognized that they must design supports creatively and actively incorporate paid and unpaid support from community members. As one director described, “There is not the funding to support people 24/7 with paid staff in individualized ways; nor is that necessarily desirable for most people to have just paid staff.” All of the organizations in this study have used shared living to assist some individuals to live in the community, which entails finding community members to provide live-in support. The organizations studied had varying approaches to this. All of them typically pay the housemate's rent and a portion of the utilities; beyond that, one organization does not pay the housemate any salary, whereas the other three generally provide some pay for the housemate, depending on the situation. Also, depending on the needs of the person with disabilities, the shared living situation may be combined with other paid supports (e.g., for daytime, weekends). As another option, one of the organizations also uses paid neighbors, who live very close to an individual and are paid for several hours of support per month but are available for more, should the need arise. In their search for housemates or neighbors, these organizations do not settle for just anyone but instead keep searching until good matches are found.
Use of combinations of paid and unpaid support provided by community members has resulted in cost-effective services; for example, one director noted that “the average costs of self-directed services have been consistently lower than for group homes.” However, most important for the administrators, these situations seem to be highly satisfactory to many individuals who receive support, as well as to people who provide supports. Additionally, in some instances, long-term committed relationships have emerged. As one director described, “We have a few cases where people have lived together for more than 10 years, where there is a real commitment, a long-term relationship.”
Moving Away From Facility-based Settings
A key component of organizational transformation was work on facility closure, as well as an end to the development of congregate settings. The organizations used two primary approaches to the closure of group homes. Sometimes they undertook a relatively short-term closure. For example, RCS spent about a year focusing on the closure of a 10-person group home: “With funding from the [Developmental Disabilities] Council, we hired a consultant to assist with person-centered planning. The process took about a year, and was facilitated by the fact that we rented the home rather than owned it.”
Alternatively, some group home closures occurred over the course of several years, because the organizational focus was not specifically on closure but on assisting people, one person at a time, to have better quality lives. One administrator said,
What we did was to help people live lives that made better sense for them, and we made a commitment not to backfill what didn't work for people. People saw other people moving, and they realized, wow, if that can happen for that person, can't it happen for me? So, that's how the group homes kind of extinguished themselves.
Funding can pose a serious challenge to closure of group homes, particularly when the organization is paying a mortgage on them. Thus, the organizations that were a part of this study have adopted multiple approaches to moving away from facility-based services. Three of the four organizations used both short-term and longer term approaches. Additionally, they sometimes reduce the size of group homes by assisting one or a few individuals who have a strong desire or need to move and leaving, at least temporarily, a smaller group of individuals who are more content to live together. All of the organizations have also committed to no new facility development.
Finally, administrators also discussed the follow-up to facility closure. One recalled, “Closing the group home was the easy part of the process, in retrospect. The challenge is really helping each person live a quality life.” Another concurred: “If you have a vision or goal of closure, don't hold on to that, because when you get there, your work has just begun.”
Beyond Staff Training to Nurturing Staff Engagement
A first step in staff development is typically state-of-the-art, values-based training. At the same time, organizations that are working on transformation recognize the need to go beyond training and emphasize staff development and engagement:
The dominant part of the day is figuring out how to develop staff, not from a training perspective, but from an emotional/relational perspective. Maybe a recommendation is, don't think you're really engaging staff because your program reaches all staff with training. … What we focus on with staff, the word we are using today is not training, not even to educate, but to engage.
Three key aspects were related to encouraging staff development and engagement: teamwork, leadership, and personal involvement. First, to promote staff engagement, administrators attempted to create a sense of teamwork. They have found that this, in addition to improving communication across staff, helps foster trust and collegiality among staff. Second, administrators provided a variety of opportunities for staff to develop their leadership skills and abilities. For example, the director of CLA discussed the ways in which she assists staff to develop their leadership skills by drawing them into various meetings and conversations with her and mentoring them, as well as by giving them space to solve some of their own dilemmas rather than just directing them to implement her solutions. Finally, to promote engagement, administrators invite and encourage staff participation in work on individual change (e.g., participation in a circle of support or a person-centered planning process) as well as in organization-wide change efforts (e.g., retreats, strategic planning processes).
Lessons and Discussion
On the basis of this research with organizations as well as the literature, a number of overarching lessons can be drawn.
There Is No One Model for Organizational Transformation
The process of organizational transformation is complex and unique to each organization, based on specific circumstances, personalities, experiences, and other aspects of organizational context and culture (Hulgin, 2004). As the director of RCS commented,
What you're probably not going to hear from us is a step-by-step blue-printed process that can be given to another organization. Lots of what you're going to hear has been emergent through interactions of individuals, context, finance, politics; so, it's sort of a stew, but there's not a recipe people can pick up and take away.
Organizational Change Entails an Ongoing, Continual Learning Process
Once they enter into efforts to create authentic transformation, organizational leaders come to recognize that change requires continual organizational learning and examination (O'Brien & Lyle O'Brien, 1991). Such continual learning, for example, enabled an organization such as RCS to recognize that closing group homes and moving people to smaller settings was not sufficient and that they needed to pursue further change to promote increased self-direction and control of supports.
Formation of Learning Communities or Communities of Practice Can Facilitate Transformation
Two of the organizations in this study were connected with learning communities related to organizational transformation. In summarizing key aspects of a learning institute in New York State, O'Brien (2009) observed, “Instead of transmitting a program of instructions for change, the Institute has been a continuing learning process” (p. 12). Learning communities provide opportunities for sharing strategies and resources and for problem solving and collaboration with representatives of other entities such as state and regional administrators, service coordination, self-advocacy, and others (Mount, 2010; Scott et al., 2010). Additionally, learning communities are a significant source of positive energy. An administrator of an organization involved in a learning community reflected, “This has been a lifeline for us.”
State Policy Context Can Pose Significant Challenges to Transformation
The state context can pose numerous challenges to organizations transforming to provision of individualized supports. With respect to this, Smull, Bourne, and Sanderson (2009) stated, “Organizational leaders find that while there are many changes that they can make, some of what is not working reflects the need for system change” (p. 6).
One of the challenges is funding levels that are inadequate to support people with significant needs in the community. As previously described, to address this issue the organizations have designed creative combinations of paid and unpaid supports, using the community resources of families, friends, neighbors, and other community members. Furthermore, to increase the organization's general revenue, and in response to requests from and needs of the people they support, the organizations have developed new services, such as postsecondary education services and consumer-directed services for people who are elderly or homeless, and provide technical assistance, consultation, or mentorship to other organizations regarding the development of individualized supports.
Another challenge is funding mechanisms that are not a good match with individualized support. For example, only one of the organizations was located in a state that uses individual budgets, which incorporate the flexibility to blend funding across various service categories, such as day services and residential services. In the other organizations, directors informally created individual budgets for purposes of planning and resource allocation. However, they were typically not able to blend the funding. Finally, in terms of funding mechanisms, providers have found that funding based on a half-month or monthly time period is much more conducive to supported living than funding based on much smaller units, such as an hour or quarter hour. Located in a state that is moving toward use of smaller units, one of the organizations is working with a statewide provider association to advocate for preservation of the larger time units.
Third, nurse practice acts pose some barriers to supported living in many states. For example, one provider explained that although state law provides for the possibility of delegation of nursing duties, this applies only in certified settings, not in uncertified settings, such as shared living. This state has an exemption for people who are capable of self-administering medication. Thus, this provider places an emphasis on assisting as many people as possible to self-administer their medications.
Fourth, in some states mechanisms for self-determination (e.g., self-direction of services) are associated with complex regulations and excessive paperwork. At the organizational level, administrators of the organizations that were part of this study worked to minimize paperwork for individuals with disabilities and families, to make the paperwork clear and concise, and to give people maximum opportunity for control and self-direction, whether using funding streams that were specifically associated with self-determination or not (e.g., assisting an individual to select the staff who supports him or her, whether or not that individual is officially the employer of record).
Overall, the organizations that were part of this study have established positive reputations with state officials for delivering quality, cost-effective services. They welcome and invite visits from state administrators and state policymakers. This positive reputation has on occasion proven beneficial to them as they advocate for specific funding for an individual or regarding certain operational issues. However, it does not typically lead to systemic change.
With regard to systemic change, within their states all of the organizations are engaged in efforts with other organizations, self-advocates, and family members to dialogue with state administrators to identify and address the barriers to supported living. For instance, as noted earlier, one of the organizations is working with a statewide provider association to preserve funding mechanisms (e.g., daily or monthly reimbursement) that facilitate supported living. In another state, one of the organizations is part of a learning community of providers, state administrators, self-advocates, and other stakeholders who have been working together to identify and address key obstacles to supported living. For example, they have worked to develop an individual budgeting process (with a concise application form), including blended day and residential funding, and to amend the nurse practice act in their state.
Organizational Change Can Have a Positive Impact on the Lives of Individuals with Disabilities
The four brief examples provided in the organizational profiles indicate the types of changes that occurred in people's lives. Organizational administrators reported very high consumer satisfaction rates with individualized supports. Moreover, and most important in the minds of administrators, were the qualitative differences in people's lives and the greater happiness and contentment that they observed through personal interaction and conversation with the individuals. In conjunction with this, administrators pointed to markedly decreased incidents of challenging behavior and decreased use of psychotropic medications. Further investigation on the impact of organizational change on the lives of individuals is needed, particularly from the perspective of individuals themselves.
Any Organization Can Make Some Change
Despite varying organization-level and systems-level contexts, all of the organizations were able to achieve some substantial change. Although systems-level change will facilitate the provision of individualized supports and further organizational change in this direction, it is important at the organizational level not to simply wait for state-level change. O'Brien (2010) quoted an administrator whose organization was empowered by the idea that it could proceed with change: “Things shifted when we realized that regardless of what the state does, we are going to move toward individualized supports” (p. 26).
Limitations of This Study
One limitation of this study is that all of the people who were interviewed were selected by the organizational directors. Thus, some alternative viewpoints may not be represented. Another limitation is that this research incorporated little focus on state-level dynamics that have an impact on organizational transformation. Further in-depth examination of the state context would be an important direction for future research. A third limitation is that this article does not provide evidence of change in the lives of individuals as a result of the work on organizational change. The brief examples that are given offer some indication that significant change has occurred for some individuals. At the same time, all of these individuals were chosen as research participants by the organizational administrators. Thus, again, other types of experiences may not be represented. Again, a direction for future research would include in-depth study of the individual perspectives and experiences of the shift from traditional to individualized support services. Fourth, I studied the organizations on the basis of only one visit rather than numerous visits over time, which placed some limitations on my ability to capture the complexity of organizational change over time. Finally, the organizations I studied were nominated as having had some success at transformation. Thus, this study does not include learning from other organizations that may have faced more difficulties and challenges associated with transformation.
Organizations arrive at the decision to transform on the basis of varying experiences, circumstances, and frameworks. Some frame their change in terms of self-determination, some in terms of person-centered planning, and some in terms of better quality lives. Across all of them, there are many commonalities with regard to strategies for change.
Authentic organizational transformation from facility-based supports to individualized, person-centered supports requires much more than just program or service change; it entails comprehensive cultural change across the organization. Key strategies include generating commitment to common values and mission, authentic person-centered planning, shifting power and control, using community supports and relationships, moving away from facility-based settings, and nurturing staff engagement. These strategies seem to be effective in helping organizations in diverse contexts make some significant shifts.
Overarching these strategies is the need for organizational perseverance and commitment to the change process. Organizational change is a long-term, ongoing endeavor. All of the organizations in this study have been engaged in change for close to 20 years, and all are still very much in the process of change and evolution. At the outset, even with rigorous planning, none of the organizations knew exactly how transformation would be achieved. However, they all had a steadfast organizational commitment to engagement in the process of change. As one director succinctly advised, “You don't have to know all the answers, you just have to be willing to be in the process.”
Preparation of this article was supported by a subcontract with the Research and Training Center on Community Living and Employment, University of Minnesota, supported by the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (NIDRR), through Contract No. H133B080005. Members of the center are encouraged to express their opinions; however, these do not necessarily represent the official position of NIDRR, and no endorsement should be inferred.
I acknowledge Steve Taylor, Rachael Zubal-Ruggieri, and Cyndy Colavita for their assistance with and support of my work. Additionally, acknowledgment is given to the constructive, helpful input from the reviewers and editor. Finally, deepest appreciation is expressed to the individuals and organizations who have shared their stories and experiences with me.
Editor-in-Charge: Glenn T. Fujiura
Pam Walker (e-mail: firstname.lastname@example.org), Center on Human Policy, Syracuse University, 805 South Crouse Avenue, Syracuse, NY 13244-2280, USA.