Organizations as a Culture and the Transformation to Person-centered Care at the Virginia Department of Behavioral Health and Developmental Services

Cecily Rodriguez May 5, 2011 PAPA 5315

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State-operated residential facilities for people with developmental disabilities have been around for well over 200 years. In fact, the very first residential facility in the United States was opened in 1773 in Virginia. It was identified as the first hospital solely for "these miserable objects that cannot help themselves". In 1769, Virginia passed a law "to make provision for the support and maintenance of idiots, lunatics and other people of unsound mind" (Scheerenberger, 1983). Throughout history, people with developmental disabilities have not been viewed

favorably or seen as people who could control their own destinies. In Images of the Disabled, Gartner and Joe (1987) edited a number of essays about how images in literature and popular culture affirmed this inferior perception. They argue that images as far back as biblical times conveyed the message that disability is a sign of Gods disfavor or brought on by sin. They go on to say that literature of all kinds depict people with disabilities as beggars, thieves, incompetent and childish. These images simply mirrored the popular belief at the time that people with disabilities were subhuman and were not able to understand a full life and thus didnt need one. With the rise of government-sponsored human services, institutional segregation of people with developmental disabilities was the accepted standard of practice from the 1900s up to the mid to late 1970s (Berkowitz, 1987). As a result of segregation in large institutions and the negative images portrayed in popular culture, people with disabilities were isolated from the mainstream population for much of the 19th and 20th century. The deinstitutionalization movement of the 1970s reflected a concern for the civil rights of what was formally known as the mentally retarded. This started with increased opportunities for children with disabilities to receive education and was followed by the independent living advocates who worked to provide settings and supports outside of institutions. As a result of these movements, fewer and fewer people with developmental disabilities are now institutionalized; most now live independently, with their families, or in group homes. Virginia is one of the last states in the union that continues to operate large residential institutions. After decades of pressure from disability advocates and the limited availability of federal dollars targeted for person-centered planning at a systems level, Virginia began to look at transforming the way it served individuals in state facilities. In October 2007, the Centers for Medicare and Medicaid Services (CMS) began a significant initiative tied to grants designed to incorporate person-centered planning (PCP) tools and practices as integral components within the infrastructure of each states service delivery system. This model was to result in changes in
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day-to-day practices that impact people's lives, in provider agency management and leadership affecting organizational policy, practice, and program outcomes; and in service delivery system infrastructure statewide resulting from changes in regulation, state policy, and system design (2009). Person-centered planning is a process for learning how a person wants to live and what is important to him or her in everyday life. The philosophy behind person-centered planning is as follows: Looks to the future and helps the individual plan for positive outcomes. Puts the person, his or her gifts, talents, goals, preferences, needs, and choices, in the center of the planning process. Helps people find and use their voices to state what is truly important to and for them. Requires really listening to the person and the people who know the individual best, and translating a vision for a better or different life into action plans. Enlists the support of family, friends, and professionals to follow through on those action plans and journey with the person to a life enriched by community connections and opportunities to contribute and receive support. (Virginia PCP Team, 2008) The outcome of PCP was expected to be that more and more individuals would choose to live outside of institutions. To this end, it is expected that institutions will downsize significantly and eventually close down all together. Several efforts in Virginia have supported the spread of person-centeredness throughout the state. The Systems Transformation Grant (STG) to the Virginia Department of Medical Assistance Services had a specific goal related to increased choice and control and the development and enhancement of self-directed services. Efforts in this goal have been largely dedicated to building capacity for person-centered planning in the state and developing an individual budgeting infrastructure. Another effort related to person-centeredness in Virginia was the Money Follows the Person (MFP) Program. This grant program provides individuals living in nursing facilities, intermediate care facilities for persons with developmental disabilities (ICF/MRs), and long-stay hospitals with greater choice and control for transitioning into more integrated community settings. A goal of this initiative was to promote quality care through services that are person2

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centered, appropriate, and based on individual needs. To accomplish this, a series of trainings related to person-centeredness have been conducted and continue to be offered throughout Virginia (Dinora, 2009). A Statewide Person-centered Practices Leadership team was formed. This team was made of executive level leadership across the state to learn more about PCP and bring those practices back to their facilities. At the time, the team was formed; the

Commissioner, Deputy Commissioner, and all four ICF/MR directors participated. Using the cultural metaphor to explore person centered planning in state residential facilities. Although there have been some significant achievements in the way that residents are including in planning and practices in facilities, the development of the person-centered planning movement has not been easy. Professionals are reluctant to relinquish their perceived power to advocates and families. Large bureaucracies that have traditionally focused on the health and safety of residents have difficulty shifting their focus to the more flexible and risky approaches needed for person-centeredness. Staffing shortages impede the ability to conscientiously provide individuals with the time they may need to make their own choices. Family opposition and the economic impact of downsizing facilities imply that implementing person-centeredness is political and economic at its core. Community supports for people with developmental disabilities have not been developed at the same rate that people were expected to be discharged under new person-centered planning goals. And lastly, the culture of residential facilities, their standard operating procedures, and limited history of collaborating with other services means that a dramatic paradigm shift is required at the individual, organizational, and systems level to fully integrate person-centered planning into the state developmental disability residential system. Although the DBHDS system encompasses sixteen residential behavioral health, developmental disability, forensic, and childrens institutions, forty community-based public mental health and developmental services programs, over eight hundred private providers of mental health and developmental services, and several dozen consumer run and peer oriented organizations, this paper will only discuss culture as it relates to traditional residential institutions. Yet, it is important to understand that the culture, practices, and procedures of the institutions are deeply shaped by the rest of the system and its stakeholders.

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In his book, Images of Organization, Morgan explains that culture is generally used to describe how different groups of people have different ways of life. (Morgan, 116) Culture is formally defined as shared beliefs and values of group: the beliefs, customs, practices, and social behavior of a particular nation or people. (Alverson, 1987). In organization as culture, Morgan argues that that the structure of an organization often determines the culture that the organization embraces.(Morgan, 117) Daily life of an organization includes just as many rituals, values, and uniform routines as a traditional culture might have and the difference is that they are occupational, not national or communal. This metaphor describes how intrinsic these rituals, values and behaviors become and is often shaped by the people who lead the organizations over time. Perhaps the most important thing that the culture metaphor illustrates is that the role of leaders and managers is to create a culture that pushes the organization and its employees to achieve its objectives. For as many as two hundred years, state- owned facilities have responded to the popular beliefs of the times. That was to keep people with disabilities off the streets and secluded from the mainstream. In the early years, the goal was to keep people with disabilities away from public view and contact at all. In fact, Southwestern Virginia Mental Health Institute in Marion was built on a hill in the early 1900s so that townsfolk would not be able to catch the diseases of the people housed there. In time, popular and political sentiment shifted to believe that even though people with developmental disabilities should be with their own kind and out of the mainstream, the government also had a responsibility to keep the safe from harm. Laws and policies were put in place to ensure that safety was of the utmost concern. Oversight agencies and public watchdog groups provided a great deal of reinforcement to this ritual of risk aversion even if it resulted in very little activity for residents on a daily basis. This is still the overarching cultural value of the facilities today. Strict policies about how bruises are reported, how injuries occur, and consequences for staff if residents do injure themselves drives most of the daily work with residents at these facilities. Staff may be less likely to take risks with residents who are particularly fragile. Staff often think twice about escorting them across the campus to a recreation area or allowing them to choose an activity that might result in an injury, no matter how minor. There is an unintended hierarchy of need at play in this scenario. Staff must keep their jobs so they are not likely to take
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risks that will jeopardize that job. If they are recognized and rewarded for safety and not for creativity with regards to allowing choice for the residents, they will choose the former. Additional staffing factors include the long standing problem of understaffing the facilities that lead to a culture that does not embrace PCP. Overtime is a chronic issue that leads to multifaceted issues with residential care. Specifically related to PCP is the fact that if staff are chronically overworked and preoccupied with the basic needs of a number of residents, they are not likely to take the time to needed to focus on engaging the resident in making choices about their care and activities. If a resident cannot make a quick decision about whether they would like a hamburger or hot dog for lunch, staff are more likely to choose for them so that they can get the rest of the residents settled for lunch. Another key cultural value of the institutions is that of professional expertise. As in any healthcare setting, there is a highly hierarchical framework for staff and protocol for decision makers. Doctors, nurses, and other specialists are the authority on a given persons assessment and treatment. One argument for this cultural value is that those individuals who end up in an institution have complex medical needs and as well as cognitive issues. Staff are expected to defer to these professionals when it comes to treatment and planning. The hallmark of personcentered planning is that choice drives treatment planning, not expertise. There is an expectation in PCP that anyone can make up the treatment planning team, based on the preference of the resident. If the resident would like the janitor on his team as a decision maker, then that should be done. The idea is that advocacy and support come from a wide variety of sources, not just those traditional supports that residents relied on before. Therefore, the practice of deferring to the experts in planning is at great odds with PCP and can and does impede implementation of such planning. Yet another element of organizational culture that shapes our institutions is the political and bureaucratic culture of Virginias state government and operating procedures. The bureaucratic mode of organization is often found to be rigid and inflexible. Such rigidity provides significant barriers to the flexibility and creativity needed to do PCP. For example, if a group of residents hear that there is a church fair up the street that afternoon and would like to go, it would be almost impossible to accommodate this request. Policies set up for off-campus permissions, staff required to take residents out, or sign up for a vehicle would make this very

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difficult. This bureaucracy has, in many ways, rendered the facilities resistant to change or adaptation. Along with bureaucracy, another closely linked element that shapes the culture of a state institution is the political practices of the Commonwealth itself. Virginias political power comes from localities. Most laws and subsequent policies are created in favor of locality rights as opposed to a strong central state government. As a result, facilities tend to run as separate and independent organizations rather than as state owned and operated entities. Directors of each facility have vast authority to direct the organization as they wish. Although there are standard operating procedures in place for all facilities, enforcement of these procedures is often lax as there is no clear mandate to provide the oversight as it relates to quality of care (which is where PCP would sit in healthcare). To date, staff reviewing operations in the central office have no specific role in operational monitoring, so staff that are concerned with a given facilities compliance with PCP have no formal authority to address it. Additionally, the fact that Virginia has a four-year governor means that leadership at the state level of DBHDS comes and goes at a rapid rate. New administrations bring in new leadership and new leadership brings new priorities and often hopes to dismantle former initiatives especially if they cross party lines. This lends to complacency on the part of facility staff as the most cynical believe that all they have to do is wait out an unpopular initiative until the next administration comes along. This complacency means that there isnt a great deal of incentive to make major philosophical and operational changes in planning and interacting with residents. Key strategies for comprehensive implementation of person-centered planning States that appear to be the most successful in developing more person-centered systems seem to embrace person-centered practices as a core way in which they conduct business, not as an-add on or a specific training and technical assistance opportunity. They mandate an individualized approach at the foundation of their support systems including their Medicaid waivers, service planning, risk management, quality assurance, and employment support. They have public support of key leadership from the Governors office all the way down to department heads. They also have to give authority to staff to form collaborative partnerships with providers and communities so that there is an active communication loop among different levels of the support system to address needed issues or concerns. That balance between a changing system6

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based fundamentals and building collaborative working relationships among different groups seems to be critical to model success. Many who speak on the subject of person-centered planning say that continued and consistent support from leadership is most critical. This support must be reflected in middle and lower management as well. In 2008, the Secretary of Health and Human Resources, the

Commissioners of DBHDS and DMAS, and the Inspector General all publically supported this shift and spent a great deal of time gaining buy-in for this shift. They implemented statewide teams, personally chaired them and personally invited facility directors to join them. They hired staff at the state level to focus specifically on providing consultation and training on PCP practices and asked facilities to plan these trainings with staff in their organizations. There was an expectation that these practices would be implemented. These actions began to shift the culture and people started thinking about the small ways in which residents could have choices about their food, their clothes, when they ate, and when they showered. Yet, as the Kaine Administration wound down, as staff began to leave the Secretarys office, as Commissioners planned for their eventual exits, and organizational charts were revised, this structure was dismantled. The new Governor, new Secretary, and new Commissioner came in and they had their own plans to move people as quickly as they could out of facilities and into the community. PCP in facility settings did not seem to be as high a priority as before. Attention shifted to goals around discharges and building up community-based services. Another critical issue that would have to be addressed in order for PCP practices to shift is the mindset of safety first. Because so much of what staff does is related to safety for people with sometimes significant health issues and cognitive disabilities, there is no room for choice and person-centeredness. Facilities must find a way to balance the risk associated with choice and the ability for residents to choose. This may be one of the most challenging tasks to overcome. Staff in the field claim that many times if people are given a choice, for example, what to eat, they will choose unhealthy foods that will then exacerbate their delicate health conditions. Some believe that because residents have limited cognitive abilities to consider consequences, then someone must make that choice for them. This paternalistic attitude has some validity, but it can also be used a justification for failure to allow choice in facilities. To encourage PCP, management in the facilities should reward 'out of the box' thinking that results in a balance between safety and PCP. They should also empower staff to make the quick
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decisions that allow for PCP principles to be utilized when working with individuals in the facilities. An exploration of how to limit or eliminate the red tape related to how and when individuals leave campus, where they are permitted to go, and with whom they are allowed to go that address both safety and person centeredness should be a key priority for leadership. DBHDS must also address how much oversight they wield over the individual facilities. More attention must be paid to quality at a systems level. This cannot be done if DBHDS does not have formal authority to deliver consequences to facilities who are not embracing PCP principles. It must be included as a quality of care measure and directors and managers must be held accountable for implementation in the long term. In our culture of local self determination, we have lost the ability to set standards and thus rely solely on buy-in from individuals to take on the culture shift. A vast majority of people agree that PCP is a good thing and it adds value to the lives of residents living in facilities; therefore directors and managers must be expected to do it, not be given a choice. As with primary care, values around professional expertise are changing. More and more providers are recognizing the importance of natural supports in the diagnosis and treatment of illness. There must be a shift in these ideas in our facilities as well. Management must take the lead in articulating to professional staff that they are a part of a team that makes decisions collectively, not unilaterally. This is happening to some degree. For example, every individual who lives in a facility has a PCP team and that team is multidisciplinary. The problem is that often, staff will defer to the doctor or other specialist in a hierarchical decision making fashion. More emphasis must be put on providers to work as a part of a team. The good news is that as cultural values shift outside of facilities, so too will these values shift inside the facility To the degree possible, specialists employed in the facility should be provided with ongoing training on teamwork and their performance evaluations should include competencies such as teamwork as a condition for financial reward and promotion. Conclusion It may be that dramatic shifts are unlikely in facilities that are more traditionally bureaucratic. Leadership may feel that there are too many external factors pressing them to operate in such a fashion. With Medicaid reimbursements driving revenue, federal oversight and watchdog groups ever present, and healthcare culture itself a bureaucratic animal, there is little hope of transforming all of the entities that impact a facility. However, there are small things
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that could be done that could make a big difference. Policies around how residents are taken off campus could be reviewed and revised to allow more flexibility. Procedures related to

volunteers and community advocates can also be reviewed to balance how much staff is required for a given outing. All the barriers to PCP can be listed and workgroups can begin looking at ways to mitigate these barriers. A focused effort to look at all the little ways that PCP is impeded in a facility would be very valuable for leadership. Having these limitations documented will also set the stage for addressing those larger systemic issues as well. These limitations may just be the foundation for policy priorities in the future as administrations shift from one party to another. If an agency has a well articulated, non-partisan plan to address commonly supported issues in the state, administrations are likely to take those plans into consideration when identifying priorities. The good news is that person-centered principles and practices are inevitable. A popular cultural shift is happening across our nation, this shift is providing more opportunities for self determination to people with significant disabilities. Fewer and fewer people are being admitted to residential settings. According to Lee Price, Director of the Office of Developmental Services at DBHDS, seventy people on average leave a state facility each year and only sixteen people are admitted each year on average. As children with significant disabilities mature and leave a more inclusive school setting, these adults and their families will be expecting more from life than one of seclusion in a facility. Individuals living in facilities are some of the most critically disabled people with highly specialized medical needs and often they are there because no other setting has been created for them. Some say that they are likely to die in these facilities and when they have passed away, the facilities will close down. The challenge for facilities then will be to make sure that the lives of these individuals are as full as they can possibly be. To do this, PCP must become a central value in the DBHDS organizational culture so that individuals living in residential settings can experience what it means to make the choices we take for granted everyday in the community.

PAPA 5315 References

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Alvesson, Mats. (1987). Organizations, Culture, and Ideology. International Studies of Management and Organization. Vol. XVII, No. 3, pp. 4-18. Berkowitz, E.D. (1987). Disabled Policy: Americas policy for the handicapped. Cambridge, England; Cambridge University Press. Dinora, Parthinia (2009). Becoming a Person-Centered Organization: Year 2 Program Evaluation Report - October 2008 - September 2009. Partnership for People with Disabilities. Virginia Commonwealth University. Pg. 5-7. Gartner, A & Joe T. (Eds.). 1987. Images of the disabled: Disabling Images, .New York: Praeger. Scheerenberger, R.C. 1983. A History of Mental Retardation, Baltimore: Brookes Publishing Co. Virginia Person-Centered Practices Leadership Team (2008). Person Centered Planning Guidebook. Virginia Systems Transformation Grant Resource Team, Partnership for People with Disabilities. Pg. 4.

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