Jay W. Bamburg, PhD, Shannon H. Thorn, MS, Amanda Pittman, BS, Pinecrest Developmental Center
The process of providing continuous active treatment in a functional, meaningful format continues to evolve in the field of intellectual and developmental disabilities. The growing need for treatment and training in real-life, real-time settings, in conjunction with the advocacy, normalization, and community movements, dictates that providers of service think "out of the box" to develop a wider array of life and learning opportunities. The present work describes a system for accomplishing continuous active treatment in structured settings, the residential milieu, and the larger community. Focus of the work includes systems change that is both efficacious and effective, the Positive Behavior Supports (PBS) framework, and outcomes based in improved quality of life (QOL). Data are provided to support the critical elements of the program, including learning opportunities, meaningful engagement, types of environmental interaction, reinforcer delivery, choice, indices of happiness, behavioral excesses and deficits, and community integration opportunities. These data, along with implications and future directions of the program, are considered and discussed.
Milieu Services: Beyond the Walls of the Psychosocial Treatment Mall
It takes a lot of courage to release the familiar and seemingly secure, to embrace the new. But there is no security in what is no longer meaningful. There is more security in the adventurous and exciting, for in movement there is life, and in change there is power (A. Cohen, personal interview, 2000).
While this quotation from author Alan Cohen was intended for the larger society, the simple truth may also be found in the world of intellectual disabilities. Through the progression of the behavioral technologies, advocacy, the person-centered planning movement, and the more newly established positive behavior supports (PBS) literature, the assessment and treatment of people with intellectual disabilities has evolved and remains an ever-advancing science (Crone & Horner, 2003). Gone are the days of the stand-alone medical model, a focus on singularly eliminating problematic behaviors, and teaching only those skills required for assimilation into congregate living settings. Today, the focus has become quality of life (QOL); that is, the supports, learning opportunities, and real-life activities required to enable people to experience happiness and inclusion, and to become meaningful contributors to the larger society (Carr, 2007).
The cultural and systems changes that must occur in order to support a QOL- based model of assessment and treatment are often difficult to achieve. In order to achieve a change of this magnitude, a number of processes and tenets must first be established and implemented. First, administrative direction must be centered and focused on moving people with intellectual disabilities, their staff, and the larger agency towards the achievement of meaningful outcomes and improved quality of life. Agencies must be structured to achieve these goals from organizational, budgetary, and programmatic standpoints, and this philosophy must become the vision of the agency and the known mode of operation.
In addition to an administratively driven vision, providers of service must also choose a philosophy of care that personifies the visions of people with intellectual disabilities as well as the larger agency. In this work, the philosophy we selected came from the PBS literature and provided an opportunity to further expand the range of available service venues (Carr, 2007). The core elements of PBS include broad based assessments and supports, teachable moments in both classroom and real-life settings (focusing on both efficacy and effectiveness), an emphasis on the elimination of problematic or challenging behaviors through the acquisition of appropriate pro-social skills, meaningful engagement with staff, peers, and environments, access to preferred activities and reinforcers, and maintenance of this philosophy across times and settings. The PBS model is strength-based and emphasizes skills that enable each individual to work increasingly towards an improved quality of life. The focus is not on achieving a "cure," but on enabling the individual to use personal strategies and benefit from engaged, enriched environments that support functional, meaningful outcomes (Singh, 2007).
The work that follows examines systems changes and procedures for Pinecrest Developmental Center (PDC), an Intermediate Care Facility for People with Intellectual Disabilities (ICF-ID), located in central Louisiana, United States. Total population of PDC is approximately 515 people. Residents of PDC are mostly white, ambulatory, and function in the severe to profound range of intellectual disability. PDC systems are reviewed with a focus on treatment planning, habilitation malls, the therapeutic milieu, and community based learning opportunities.
The core features of the program involve the participation of each individual and his or her integrated treatment team into an Individual Support Plan (ISP). The ISP is an individualized summary of supports and services. The interventions outlined in this document are building blocks designed to enhance autonomy, independence and improve overall quality of life. The document is also amendable based on ever-changing consumer needs. This treatment planning document contains all treatment mall classes, therapies, and supports that an individual is engaging in in order to promote habilitation and wellness. The integrated treatment team, with each individual, is responsible for the design, implementation, monitoring, and modification of each treatment plan. This process serves as the catalyst in the treatment model to overcome barriers and transition to the next level of care.
The psychosocial treatment mall (Thorn, Bamburg, & Pittman, 2007) serves as the center of all treatment and therapy in this model for individuals with developmental disabilities. The interdisciplinary treatment team is continually involved in the planning, implementation and review of individual and treatment mall activities. The psychosocial treatment mall facilitates skill acquisition in classroom settings similar to standard academic structure, which has proven effective for individuals with intellectual disabilities (Cole, Waldron, & Majd, 2004). An appropriately structured psychosocial treatment mall addresses the functionality of learning activities and the context in which the skill is trained. The goal is to promote and develop engaging environments that support functional meaningful outcomes. Readers can find a more thorough review of this base process for active treatment in Thorn, Bamburg, and Pittman, (2007).
Going Beyond the Walls
Habilitation treatment malls constitute a focused approach of service delivery that allows an agency to maximize time in treatment and resources by providing a large array of services. Treatment in the mall setting is provided, as much as possible, in the context of real-life functioning and in the rhythm of life of individuals. Therefore, a fully-functioning mall extends beyond the context of a building or place to provide treatment, habilitation, and enrichment across times and settings.
The first extension beyond the formal treatment mall classes is the movement of
learning opportunities to each individual's residential milieu. The milieu is developed utilizing components of PBS such as teachable moments, meaningful engagement, access to preferred activities, and acquisition of appropriate skills in the "rhythm of life" context. The participant's milieu is expanded by the development of a focused, individualized menu of skills drawn from existing treatment mall resources. These classes serve as a catalyst for developing the individualized therapeutic milieu as part of the ISP. This menu of skills becomes the focal point of teaching, reinforcement, and generalization in the residential milieu and is utilized across times of day. This process of teaching, engagement, and reinforcement breaks the mold of traditional residential groupings for meals, activities, and completion of ADLs and allows individuals to share activities and experiences based on personal preferences and individual needs. The process further builds momentum as experiences and preferences are shared and create a cycle of discovery for each individual and their staff.
As staff increase their investment and understanding of the therapeutic milieu, the concept can influence and drive the entire treatment planning document (instead of only those skills trained in the habilitation mall). This expansion can include other learning-based supports and therapies, service-based supports, personal goals, interests, and preferences. Additionally, the training and reinforcement of these skills can be adapted to additional settings. Once the link between the therapeutic milieu and ISP becomes part of the staff mindset the environment becomes the source of an ever-changing learning opportunity with the potential for a limitless supply of information and reinforcing contingencies. Finally, the implementation of the agency-based therapeutic milieu can serve as a springboard for expanding inclusion and can also facilitate further community integration by addressing many of the common issues that impact interpersonal relationships - including proximity, reciprocity, mutually reinforcing events and choice (Kennedy & Itkonen, 1996;Pottie & Sumarah, 2004).
The development and implementation of the agency-based milieu has broader implications than care for the individual. For staff, treatment plans become more than foreign clinical documents. They play a more meaningful role in day to day operations. Teaching and treatment implementation strategies begin to make sense and staff's role in the treatment team model is validated and essential.
The data presented below provide outcome data to demonstrate what can be achieved through co-operative and participatory planning, implementation and monitoring of the therapeutic milieu. The data elements considered in analysis of the milieu include teaching opportunities available and implemented, reinforcers available and delivered, presence and management of challenging behavior, the nature and quality of environmental interactions, indices of happiness, and choices available and taken. Data for elements was collected on the individual program observation form and are presented for the calendar year 2006.
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In addition to program observation data, the agency also collects data on engagement by means of brief group observations and assessments in each residential setting. This group observations data are reported in terms of group engagement percentages (e.g, if 10 people are present and 3 are engaged at the time of the observation, 30% engagement is documented and reported). These data are collected on a daily basis by clinicians and residential administrators. Traditionally assessment of group activities in congregate settings relied on measures of adaptive vs. nonadaptive, age appropriateness vs. inappropriateness and purposefulness vs. nonpurposefulness (Reid, Parsons, & Green, 2001). This data suggest that acceptable levels of engagement fall within 20-25% of participants. Most programs considered 50% engagement as a realistic goal for service providers. These results are usually based on a 1:4 individual to staff ratio for ambulatory individuals (Reid et al, 2001).
A functioning therapeutic milieu can greatly effect engagement based on both the flexibility and consistency of the available activities. Instead of matching activities to groups, there is a match of people to preferred activities, which can promote secondary group formation. This interest-based approach frequently results in increased group involvement, investment and overall level of engagement. Data presented below represent facility engagement percentages for groups of individuals who are ambulatory, non-ambulatory, and function across the full spectrum of intellectual disabilities. Data collection covers a twelve month period, calendar year 2006.
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Moving the Milieu to the Community
The final, and perhaps most important, portion of the therapeutic milieu utilizes all community resources as a means of training, reinforcement, practice, and experience. While formal practice of skills in a classroom setting and reinforcement in the residential milieu are important, these aspects alone are not sufficient. Individuals must have opportunities to take their newly acquired skills into specific and contextually-matched settings in order to demonstrate mastery of the objectives necessary for discharge. Community based learning opportunities are also critical for personal growth, as connections with the larger community build experience, confidence, and interpersonal relationships (Pottie & Sumarah, 2004).
All community-based opportunities in this system must be treatment or enrichment based and must be derived from each individual's treatment program. Staff who organize/supervise trips use the treatment plan (ISP) and choose the skill-set to be trained or reinforced during the course of the community-based activities. This information (people going; location of trip(s); each individual skill to be trained; individual's response to training/experience; duration of the learning experience) is coded on the agency trip sheet. Trip sheets are routed to a centralized data base at the conclusion of each day, and information related to community-based learning opportunities is made available to treatment teams (on a weekly basis) for discussion and integration into the treatment plan. In addition to clinical elements, this process also allows the agency administration to monitor van usage, mileage, etc., in order to make budgeting and other resource decisions related to community-based activities and learning opportunities.
Table 3 includes the number of individual community based learning opportunities for the agency, by month, in the calendar year 2006. Additionally, beginning August 2006, the system evolved and allowed evaluation of monthly duration of community-based learning opportunities per individual as a critical variable in the community learning experience; therefore, these elements are presented for August, 2006, through December, 2006 in Table 4.
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A Vehicle to Discharge
As individuals grow, learn, and progress through the treatment process, the prevailing question encompasses the individual's ability to handle and benefit from the most integrated setting that matches his/her needs and skills. In this system, the ISP is written and developed as a discharge plan. Active treatment focuses on those barriers that prohibit the individual from living in a more integrated setting at the time of the planning. In addition to a myriad of treatment and therapies, each plan contains required supports and enrichment opportunities that help to ensure "wellness in habilitation." The habilitation mall services and the therapeutic milieu (both agency- and community-based) are the tools that each person and the team utilize to navigate barriers and challenges. Each treatment, habiliation, support, and enrichment area is reviewed on a monthly basis by the treatment team, modified as required, and quickly implemented to ensure that each person moves quickly and efficiently through the course of treatment and to their vision, life goals, and, as appropriate, placement in the most integrated setting.
The data found in Table 5 represent discharges from the agency to more integrated settings (community homes of 6 people or less; group homes of 6-16 people; Home and Community Based Waiver services, 1-3 people per placement). Agency to agency transfers or transfers to skilled nursing facilities are not included in these data. Data are presented for the 2006 calendar year.
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The future direction of the treatment program involves all four phases of the paradigm. With regard to the functioning of the integrated treatment team and the planning process, the agency will continue training, mentoring, and clinical oversight of these processes in order to fine-tune and allow the teams to become more efficient and effective. The improvement goal for the treatment mall services involves continuing to increase both the number of available classes and the number of community-based teaching/learning opportunities initiated by mall staff (e.g., teaching safety skills in area police or fire stations vs. pure classroom instruction). With regard to the agency-based milieu, training will continue with staff and will focus on incidental, teachable moments across all times and settings. It is essential that staff perceive these teachable moments, engage the moment, provide feedback and reinforcement, and reliably report these experiences to the treatment team. While these goals seem lofty given the traditional roles of residential staff, the framework that is already in place within the agency has provided the building blocks to move the program to the next level.
Finally, the improvement plan for the community based learning opportunities includes two areas. First, the agency is currently developing a mechanism to acquire program observations and reliability data on the quality and richness of community based opportunities. Second, the agency is currently working with a larger number of private, community-based providers of service to establish more extensive educational opportunities related to residential, habilitation, and work options. While a program that follows this treatment paradigm already exists, our goal is to expand it to the numbers of learning opportunities specific to these areas.
Carr, E.G. (2007). The expanding vision of positive behavior support: Research perspectives on happiness, helpfulness, hopefulness. Journal of Positive Behavior Interventions, 9, pp. 3-14.
Cole, C., Waldron, N., & Majd, M. (2004). Academic progress of students across inclusive and traditional settings. Mental Retardation, 42, 136-144.
Crone, D.A. & Horner, R.H. (2003). Building positive support systems in schools. New York: Guilford Press.
Kennedy, C. & Itkonen, T. (1996). Social relationships , influential variables, and changes across the lifespan. In L.K. Koegel, R.L. Koegel, & G. Dunlap (Eds), Positive behavioral support: Including people with difficult behaviors in the community. Baltimore: Brookes.
Pottie, C. & Sumarah, J. (2004). Friendships between persons with and without developmental disabilities. Mental Retardation, 42, 55-66.
Reid, D.H., Parsons, M., & Green, C. (2001). Evaluating the functional utility of congregate day treatment activities for adults with severe disabilities. American Journal on Mental Retardation, 106, 460-469.
Singh, N.N. (2007). Department of Mental Health WRP Manual. State of California.
Thorn, S.H., Bamburg, J.W., & Pittman, A.J. (2007). Psychosocial treatment
malls for people with intellectual disabilities. Research in Developmental Disabilities. Research in Developmental Disabilities, 28, 531-538.
For further information, contact Jay W. Bamburg, PhD, Pinecrest Deveopmental Center, P.O.Box 5191, Pineville, LA 71361-5191
Table 1. Individual Program Observations completed January 1, 2006-December 31, 2006 (1976 total observations).
Observation Categories#%of the Total Sample
Teaching Opportunities140070.851976 Total observations
Teaching Implemented124989.211400 Teaching opportunities
R+ available125863.661976 Total observations
R+ delivered118194.561258 Observations during which R+ was available
Challenging behavior observed 49 2.481976 Total observations
Behavior support followed 4489.80 49 Observations during which challenging behaviors were observed
Emergent procedure avoided 4081.63 49 Observations during which challenging behaviors were observed
Purposeful age appropriate121449.90*2433 Environmental interactions
Purposeful age inappropriate 24 .992433 Environmental interactions
Engaged 82033.702433 Environmental interactions
Non-adaptive 61 2.512433 Environmental interactions
Aggressive/Disruptive 17 .702433 Environmental interactions
Self-Care 55 2.262433 Environmental interactions
Watching television 103 4.232433 Environmental interactions
Other 139 5.712433 Environmental interactions
Happiness146173.941976 Total observations
Unhappiness 73 3.691976 Total observations
Non-Occurrence 44222.371976 Total observations
Observations/choices presented143372.51976 Total observations
Observations/choice taken128889.91433 Observations in which choice was presented
*Multiple environmental interactions may be observed during one program observation.
Table 2. Meaningful Activity Observations completed January 1, 2006-December 31, 2006
Count of all observations7073
% Meaningful Activity 84%
% Non-Adaptive Activity 13%
% Other Activity 3%
Table 3. Community-Based Learning Opportunities per month January 1, 2006- December 31, 2006
February 2006 929
Table 4. Monthly duration of community-based learning opportunities per individual for January 1, 2006-December 31, 2006
DurationAug. 2006Sept. 2006Oct. 2006Nov. 2006Dec. 2006
Table 5. Discharges from the agency to more integrated settings January 1, 2006- December 31, 2006
MonthNumber of Discharges