Feature Issue on Person-Centered Positive Supports and People with Intellectual and Developmental Disabilities

Many state agencies supporting people with intellectual and developmental disabilities (IDD) have relied on reactive approaches to address the challenges that arise, resulting in out-of-home or insti­tutional placements. This article describes how the Missouri Division of Develop­mental Disability (MO DDD) has been changing statewide policies to improve quality of life (QOL) outcomes for people with IDD by establishing positive and proactive strategies that naturally pre­vent challenging behavior. Two types of statewide strategies have been employed: 1) changes in policies, procedures, funding mechanisms, and evaluation systems; and 2) a three-tiered training and technical assistance infrastructure for supporting people with IDD by improving QOL and preventing challenging behavior.

Tiered Model for Improving Quality of Life Outcomes 

The statewide changes and technical assistance strategies implemented by MO DDD were based on a three-tiered model used widely in schools, public health, early childhood, juvenile justice, mental health, and other settings (Freeman et al., 2014). In this model, each preven­tion level increases along a continuum of intensity, with a focus on increasing QOL outcomes for people with IDD by pro­moting positive social interactions. These prevention levels are referred to as Primary Prevention, Secondary Prevention, and Tertiary Prevention.

Primary Prevention in IDD Organizations 

The Primary Prevention level emphasizes the importance of implementing universal interventions for improving the QOL of everyone within the organization, includ­ing staff members and the individuals they support (Putnam, George, LePage, Rodgers, & Freeman, 2014). Organizations implementing Primary Prevention strat­egies use a team-based approach to assess broader social policies, training, resource allocation, and environmental or service issues that impact QOL. Primary Pre­vention includes teaching, practicing, and reinforcing universal social skills; creating positive and predictable home and work settings; and promoting person-centered environments that encourage meaningful participation within the community. Staff members learn to encourage people with IDD to express themselves, make choices, and engage in self-determined actions. Figure 1 shows the tiered model with examples of strategies used at each level.

Secondary Prevention in IDD Organizations

Interventions at the Secondary Prevention level include screening and early identifi­cation of individuals who need additional social, emotional, or communication supports, and increases in reinforcement within an environment. Group or individ­ualized interventions are used in Second­ary Prevention to support people with IDD by providing acquisition strategies for home and work-related skills, counsel­ing and mental health services, communi­cation and coping strategies, relationship and friendship building, and sexuality education. Simple interventions are used to address development and encourage­ment of new social, communication, emo­tional skills that will improve QOL. Data systems are utilized to monitor progress through established and regular feedback loops within an agency.

Tertiary Prevention in IDD Organizations

The goal of Tertiary Prevention is to reduce and prevent severe and chronic challenges for a smaller number of people who may need more intensive individ­ualized supports to help improve QOL. Individualized positive behavior support (PBS) plans are implemented at the tertiary level within the context of person-centered planning with primary and secondary prevention supports. Interventions at the tertiary level involve a more highly inten­sive assessment and technically complex strategies to address challenging behavior.

A triangle divided into 3 sections. The bottom of the triangle has the words, “universal strategies (all designed to improve quality of life. All need an 80%-90% success rate with this level only) .” The middle of the triangle has the words, “focused strategies (5-10% group based teaching, reinforcement, common problems & situations).” The top of the triangle has the words, “intensive individualized strategies (1-4% need if levels below present).:” To the left of the triangle are person-centered strategies for each level. To the right are positive support strategies for each level

Person centered strategies

Universal strategies

• Encourage self-expression and choices
• Meaningful participation in community
• Plan designed by person

Focused strategies

• More intensive supports to improve quality of life
• Independence and community involvement
• Special emphasis/teaching

Intensive, individualized strategies

• Integrated plans
• Trauma informed therapy
• Individuals with positive supports
• Teams monitor progress

Positive support strategies

Universal strategies

• Use of tools of choice
• Teach and recognize life values
• Reinforcement system
• Meaningful day
• Healthy relationships

Focused strategies

• Problem solving
• Coping skills
• Social skills
• Visual schedule
• Check in/check out

Intensive, individualized strategies

• Behavior analysis
• Specialized mental health services
• Intensive supervision

Statewide Self-Assessment and Action Planning

The MO DDD team began the systems change process with a statewide self-assessment and action plan to consider the most efficient and effective ways in which to proceed with implementation efforts. Elements that were considered within the self-assessment included:

• The types of data systems that were already in place for services.
• The practices that were used to prevent problem behavior.
• Policies and procedures related to behavioral services and QOL enhancement for individuals with IDD.
• The state staffing patterns and job positions.
• Training and technical assistance for organizations.
• The systems that would need to be modified as part of a comprehensive statewide model for preventing challenging behavior.

At the time of the self-assessment, the Missouri state legislature had recently established a licensure mandate for the practice of applied behavior analysis (ABA), and limited this practice to licensed behavior analysts and professionals with documented experience in behavior analysis. As a result of this action, 20 Behavior Resource Team (BRT) state employees were providing the unregulated behavior therapy intervention in approximately 50% of the 11 state regions. Only one of these staff members met the new licensure requirements, suggesting that the state team might need to utilize BRT members differently within statewide planning efforts. The self-assessment of the state’s tertiary resources also indicated the state had fewer than 70 licensed behavior analysts and approximately 50% of these individuals were designated providers for the IDD system through the state’s Medicaid Waivers. The lack of capacity for behavioral support services provided a greater sense of urgency on the part of the state team to develop and implement primary and secondary prevention strategies.

The information gathered during the self-assessment process was used to establish activities supporting five major objective areas. Table 1 summarizes each of the following areas: 1) data analysis, 2) preventative practices, 3) policies and procedures, 4) systems modifications, and 5) training and technical assistance.

Establishing a Technical Assistance Infrastructure for Tiered Supports

The data, systems, and practices used in school-wide PBS efforts were adapted by the MO DDD team to design a technical assistance infrastructure for supporting IDD organizations. Figure 2 provides a visual comparison of the two statewide PBS training systems.

Although the statewide planning processes used in Missouri’s PBS efforts in schools and IDD organizations include different goals, members, and data systems, both teams employ similar systems-change methods to address funding, policy, political support, infrastructure, and issues related to visibility of implementation efforts across the state. Coordinators train and support regional coaches, communicate with the statewide team, and summarize data for decision-making at the statewide level.

For evaluation purposes, the unit of analysis for school-wide PBS is at the building level while the unit of analysis for organizations supporting people with IDD varies depending upon each organization’s characteristics. Larger organizations may be responsible for a wide range of services for people with IDD and, therefore, the organization-wide team may start im­plementing PBS within a specific type of service. These larger organizations begin implementation in residential settings, supported employment or with families. Gradually, PBS is expanded across of the different types of services an organization provides. Both state teams design strategies for recognizing and celebrating the exem­plary work of participating organizations.

 

Two flow charts next to each other. These two flow charts are showing the interagency statewide teams for the state of Missouri. On the left is the Missouri school-wide positive behavior team. On the right is the Missouri DDD organization-wide positive behavior support team.

Missouri School-wide Positive Behavior Support

Systems

• State-wide coordinator
• Regional consultants
• School coaches and teams
• Unit of implementation = school building
• System of recognition (bronze, silver, gold)
• Training designed for implementation phases 

Data

• School-wide evaluation tool (SET)
• Team assessment and fidelity tools
• Office referrals
• School improvement data 

Practices

• School team uses data to identify, implement, and evaluate practices

Missouri DD Organization-wide Positive Behavior Support

Systems

• State-wide coordinator
• Regional behavior resource team members
• Organization-wide teams
• Unit of implementation = agency
• System of recognition in development
• Training designed for implementation phases

Data

• Agency systems and supports evaluation tool (ASSET)
• Event monitoring tracker (incident reports)
• Quality of life data
• Organization-wide improvement data

Practices

• Agency team uses data to identify, implement, and evaluate practices

Piloting Organization-wide Planning

Over a two-year period, 33 organizations were recruited by the MO DDD team to participate in PBS training and technical assistance. Each organization formed a team with members who represented staff from different areas: supported employ­ment, residential supports, management and administration, people with IDD, family, and other community members. During the first year of the pilot, teams met regularly to identify the organization’s strengths and needs and to create an action plan for implementing primary prevention.

Regional Coaching, Training and Facilitation

Behavior Resource Team (BRT) members served as coaches for organization-wide teams on an ongoing basis as these teams implemented primary prevention. The role of the regional coach included providing ongoing technical assistance, recommend­ing best practices, evaluating progress, and assisting teams in problem-solving during meetings throughout the year. Interventions were implemented using a consensus-based approach with the involvement of all stakeholders. Teams learned how to use data to guide action planning.

Establishing Comprehensive Data-based Decision Making Systems

Organization-wide teams learned to use the following data for decision-making purposes:

• Individual QOL measures.
• Incident reports and other related documentation (e.g. use of restraints, human rights committee referrals).
• Observations recording the ratio of positive and negative interactions occurring during specific routines.
• Satisfaction, stress, and climate surveys.
• Organizational data related to staff attrition, injury, sick days.
• Overall improvements in the efficiency of staff development and performance management.

An important goal in data-based decision making was to establish a fidelity-of-implementation measure. The School-wide Evaluation Tool (SET), used to evaluate fidelity of implementation in school-wide PBS implementation efforts, served as a model as the MO DDD team developed a plan for evaluating organizations imple­menting primary prevention. Since initial research on the SET indicated psychomet­ric soundness (Horner et al., 2004), the MO DDD team modified the SET for use in organization-wide implementation efforts. The modified version of the SET was then piloted with the 33 pilot organi­zations implementing PBS.

Agency Systems and Supports Evaluation Tool (ASSET)

The new fidelity-of-implementation tool, referred to as the ASSET, was used in evaluating the extent to which organiza­tions were implementing person-centered environments that promoted indepen­dence, self-determination and community inclusion. The ASSET included reviews of permanent products, onsite observations, and staff and individual consumer inter­views or surveys. Regional Coaches (BRT staff members) and agency team members conducted the ASSET in order to:

• Assess features of person-centered thinking and PBS that were in place before and after implementation.
• Determine goals for action planning.
• Evaluate the impact of organization-wide tiered supports.
• View an organization’s progress implementing PBS over time.

Quality of Life (QOL) Data

The MO DDD team considered QOL to be an important outcome measure, with data collection needed across all three prevention tiers. At the primary preven­tion level, QOL measures were already gathered as part of individual service plan (ISP) outcomes. However, since most organizations traditionally have not used data for decision-making, the team felt that additional technical assistance would be needed to ensure organization-wide teams would be prepared to use QOL data for decision making at primary and sec­ondary prevention levels. A task currently underway involves introducing these new primary and secondary QOL evaluation procedures into the training process. 

Event Monitoring Tracker (EMT)

The main system already used by the state of Missouri for reporting purposes is called the Event Monitoring Tracker (EMT). In the past, any EMT analysis required a tedious review process for each incident report. The new EMT system that was modified by the MO DDD team made access to data easier at the organiza­tional level and provided graphic displays including the frequency of incidents occur­ring by month, types of incidents reported, day of the week the incidents occurred, and the time of day that an event occurred. Regional coaches shared the EMT data with their assigned organization-wideteams, assisted these teams in analyzing data during planning meetings, and facilitated the active use of data for evaluation purposes.

Conclusion

It is no longer sufficient for organiza­tions supporting people with IDD to rely exclusively on tertiary behavioral support systems. A more proactive approach is needed for improving QOL using data for both progress monitoring and early screening and intervention at local, re­gional, and state-wide levels. While many states already implement services that address primary and secondary prevention, few have aligned and coordinated these services along a continuum of intervention intensity using evaluation data for progress monitoring and early intervention to pre­vent behaviorally-related crises. The state of Missouri has reinforced the idea that coordination of a three-tiered model of PBS can occur, not only within the IDD field, but across agencies using the data, systems, and practices.