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

At Upper Valley Services we base our supports for individuals with intellec­tual and developmental disabilities on the concept of relationship. This is as true for people who have histories of challenging the system as it is for people who do not. We do not believe that we have the ability to control or change behavior of another through external means (e.g., compliance based programs). We do believe we can assist an individual in changing their own behaviors as a result of providing supports that are valuing, respectful, and educational. We feel that we need to empower people, which requires that we become their allies. Rather than controlling and directing, our energy is spent providing support and fos­tering a climate where individuals feel safe and empowered. When this is achieved, people become open to guidance, and pos­itive change in the behavior patterns that have historically been problematic change in time to more adaptive, functional, and satisfying responses.

Upper Valley Services (UVS) is a non-profit organization located in the central part of Vermont that uses person-centered plans to support nearly 200 individuals with intellectual and develop­mental disabilities in any area of need that prevents them from being full participants in community living. It is one of Vermont’s Designated Agencies, which means UVS has a defined catchment area for which it is responsible. This responsibility includes providing or arranging for services and supports for anyone residing within the catchment area who is both eligible for services (as defined by State of Vermont regulation) and who meets a priority for funding as defined by the Vermont State System of Care Plan.

The primary service model in Vermont is a foster home model called shared living. For the most part, these are typical home settings where a person is supported as part of a family-based approach. In most instances, only a single individual is sup­ported in a shared living setting. There are other support models also available, which include supporting individuals in their own apartments, supporting individuals to remain in natural family settings, sup­porting people to live with a roommate or supporting people to live in a small group home (UVS has a single group home that supports three people with significant medical needs). Through UVS a person is able to access supports that are appropri­ate for their specific needs and interests ranging from a shared living setting, to a supported apartment, to semi-independent living.

As Vermont fully supports service models that are individualized, the type of setting is based on need and interest. Day support options are similarly individual­ized with the priority being given to sup­ported employment. Non-work community support strategies are directed towards assisting individuals to learn and use the communities within which they live and work. UVS recognizes that community inclusion goes beyond community presence and must include reciprocal participation with other community members.

Most of the people we support with histories of challenging behavior are people who have significant trauma histories. They are also people who, in many instances, have an absence of healthy attachment relationships. These realities must play a primary role when thinking through how to create a supportive environment. We need to meet individuals where they are at, where strong positive relationships can be developed, where environments are safe, where support people see themselves in an ally role, and where the individual has the ability to feel increasingly empowered and in control of as much of their life as is possible. Teaching people how to recognize stressors that influence challenging behaviors, helping them to develop alternative responses that are more adaptive (i.e., through self-regulation strategies), and supporting individuals to arrive at satisfactory solutions to problems are all strategic elements.

In our experience, in most instances the behaviors that are the most challenging are ones that have origins that (when recognized) make the behaviors understandable. Medical causes are always the first to be explored and to be re-explored. Many individuals are unable to effectively communicate their distress and the resulting expression of this discomfort is excessive behavior. This is true when the origin is medical as well as when the origin is non-medical. In many instances the “treatment approaches” that have been followed historically have been ones that have actually sustained the challenging behavior rather than assisting the individual to develop more adaptive alternatives. For many of the people we support, previous approaches have often been compliance-based programs with contingency management components that simply have not worked. In most instances, the intensity of these compliance requirements (often in conjunction with various forms of penalty provisions) have resulted in an almost endless war between the individual and those trying to modify the person’s behavior. We try to approach these individuals from more of a partnership perspective. We accept that behavior is communication, and that the most excessive forms of behavior are based in poor relationships between the individual and those trying to provide support. Assisting a person in better self-regulation must begin from the understanding that trusting and respectful relationships must be at the core.

Upper Valley Services has assisted a large number of people to live and work successfully in communities of their choosing. We believe that people must be able to exercise control over their lives. We also believe that we, as providers and supporters, must be extremely careful not to assume a parent-like role in our relationships with those we support. We must be their allies and not their supervisors. Only when these relationships are more evenly balanced are the trust bonds that are so essential able to evolve. We believe that a program based in “support and guidance thinking” will be more effective than one based in “supervision and control thinking.” We also believe that everyone is an individual, and this necessitates support plans that are unique to the person, rather than being a function of program-wide rules requiring uniform compliance.