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

The New Mexico Developmental Disabilities Supports Division (DDSD) authorizes a community-based system for people with intellectual and/or developmental disability (IDD). Central to these endeavors are individualized, person-centered supports adhering to the principles of positive approaches and positive behavior support. In this article, we describe some of the foundational principles, scope of training, and lessons learned through challenges.

Guiding Principles and Values

We strive to build support that creates community rather than chaos or control. Six factors essential in our process are presented below.

Factor One: Our guiding task must be to help individuals build a life rather than be their life.

At its root, the practice of person-centered supports stems from the individual’s desired lifestyle – not our own. We focus on their preferences and teach skills necessary to pursue their desired ends. The guiding beacon must come from the per­son’s perspective. Lovett (1996) reminded, “As long as a group feels it is responsible for another group rather than responsi­ble to them, its peace of mind necessarily depends on the passivity of the controlled people.” A primary goal of our system is to encourage individuals to become active agents of change in their own lives rather than passive recipients of prescribed care.

Factor Two: If you want to change someone else’s behavior, change your own first.

Too often we keep trying the same or similar interventions, with an exclusive behavioral focus absent enduring impact, and expect a different result. Instead of getting creative, we get louder. A well-crafted support plan highlights strategies aimed at guiding team engage­ment with, and reactions to, the individual. At times the “disability” does not reside in the individual so labeled, but in the deficits of the environment and skills of the people around them. Our practice of person-centered supports is grounded in a notion of life-long education for all members of the system. To these ends, we remain focused on guiding the team toward under-standing possible contributing factors (e.g., genetic predisposition, developmental and physiological compromises, residual impact of abuse and trauma, co-occurring psychiatric conditions, communicative intent, and environmental stress) with a primary goal of adjusting our own under­standing and reactions to meet the person’s needs rather than our own goals.

Factor Three: Everyone (including you) is doing the best they can with the tools they have. If they could do better, they would.

From a person-centered perspective, we believe the work is about helping individu­als gain and learn to use new tools. Almost all individual events that challenge our system are efforts toward communication and self-agency. We must determine what a person is trying to communicate, express our interest in “hearing” the message, honor the need behind it (when possible), and then move on to teach new ways of asking/communicating. As challenges are encountered, risk and mistakes are cornerstones of learning. When a person stumbles, the task is to help them up, look back at where the error was made, and look forward to the next opportunity to improve. Interventions based in education, rather than control, are what we all prefer in our own lives.

Factor Four: Proposed interventions should be something you would accept in your own life.

The connection between stress and behavioral challenges is clear – the more stress an individual encounters, the more times he or she will end up apologizing for missteps in trying to lessen the burdens of daily life. Think about the last time you acted in a way for which you later had to apologize, felt badly about, or would be embarrassed to share. From the perspective of person-centered supports we would assume that you were doing the best you could with the tools you have and the stress you were under. Now consider how you might respond if the mandated inter­vention from those around you included removal of important items or activities. What do you need and want when you are distressed? What would this type of inter­vention do to your stress level? Might you “have another behavior”? Person-centered support is not just for people with IDD – it applies to all of us. Take a step back; ask yourself how you might respond if under the gaze of an ever-increasing hierarchy of staff, managers, coordinators, teams, guardians, and courts. It is amazing we do not encounter more behavioral challenges.

Factor Five: Punishment comes with a series of side effects. It can almost always be avoided.

Consider this: When we “take control” of a situation, the person at the center of this interaction is automatically “not in control.” Therefore, we should not be sur­prised when these types of interventions end up with people acting “out of control.” Further, what skills does a person learn from punishment? Anxiety-based com­pliance is no way to help a person build a life. The problem here is that people with IDD are, by virtue of the diagnostic label and position in the system, at risk of being overtly controlled and covertly “managed” with little access to recourse. Individuals’ attempts to “get around” aversive programs are often framed as “manipulative” and “non-compliant” rather than sometimes reasonable, adaptive expressions of distaste for a situation that any of us might find paternalistic and offensive. Instead of thinking about what we want less of, think about what skills we can increase to take the place of the “problem.”

Factor Six: Over time, successful programs seek balance between, and benefit for, everyone involved, especially Direct Support Professionals (DSP).

As described above, our approach to person-centered support insists that we are vigilant in maintaining a respectful focus on individual interests, preferences, and desires. Beyond this foundational core we hold that an essential aspect of our approach to person-centered support is that all parties experience their working relationship as safe, fun, and nurturing. Indeed, the most powerful and inspiring outcomes we witness arise when DSPs have a place and a voice at the planning table and when the same regard is extend­ed toward them as they are expected to extend to those they support.

Approaches to Training

As part of our proactive efforts towards creation of a sustainable and consistent system of person-centered supports DDSD and the Bureau of Behavioral Sup­port (BBS) offer a litany of required and optional trainings that cover a wide range of applied practice and larger philosophical frameworks. Initial mandated trainings include, but are not limited to, Person-Centered Planning; Teaching and Support Strategies; Advocacy Strategies; Participatory Communication and Choice Making; and Promoting Effective Teamwork. Further, BBS offers a range of trainings focused on behavioral practice and mental health aspects. These include, but are not limited to, Foundations of Positive Behavior Support and Positive Approaches; Dignity of Risk and Duty of Care; Co-Occurring Mental Health Conditions in People with ID; Healthy Sexu­ality; Human Rights Committee Guidelines; and Trauma Informed Care. In addition, we engage in tailored technical support and training at the levels of individual planning, specific site concerns, and/or provider agency.

Overall, we have found that these curricula help to prepare individuals at all levels of the system to focus their efforts toward support and guidance rather than manage­ment and control.

Lessons Learned 

For the last 10+ years BBS has system­atically examined indicators that are the most potent contributors to a person’s perceived quality of life. We also find a compelling correlation between these indicators and authentic behavioral change. There are five indicators. 

First, the most powerful agent for positive outcomes firmly resides in the duration and nature of the person’s relationships with family, support staff, peers, house­mates and members of the community. When work life becomes life’s work, and “we and them” becomes life sharing, ex­traordinary possibilities emerge.

Second, the entire support team has an or­ganized and focused plan for maintaining, enhancing, or building essential skills. We observe enhanced social capacity and func­tional communication skills as essential for most individuals. 

Third, assisting with opportunities for community and social integration must be approached at a pace and scope deter­mined by the individual. We observe a broad spectrum of preferred lifestyles from quiet, contained, predictable routines to wildly, apparently chaotic, variety. We endeavor to understand, appreciate, and honor each person’s preference. 

Fourth, we hold an ecological perspective on why people feel and act the ways they do as opposed to directly “treating” be­havior. What unmet need or desire drives behavior is a constant inquiry. However, we recognize that DSPs will confront distressing, at times violent, events while providing support. We also provide specific guidance addressing proactive/preven­tion considerations; direct intervention that emphasizes attending to the person’s distress and safety for all; strategies for restoring stability and returning to desired activities; and in fractional circumstances, assuming a “management” posture for brief periods of time.

Finally, we continually assert the critical contribution that each team member is capable of making. We actively teach DSPs how to organize and communicate what they know, often intuitively, about the individuals they support. Each of us is “expert” in our version of the person’s story. We encourage many authors to draft the next chapter.