Self-Directed Supports: a push to empower people with intellectual and developmental disabilities in upstate New York
For individuals experiencing intellectual and developmental disabilities, the ability to make choices can be reduced by the services and programs that are meant to provide support. This is especially worrisome because it is by making choices that we learn and help determine our life course. New York State has many traditional habilitative services including day habilitation, residential habilitation, and community habilitation. All of them are developed to be person-centered and have individual plans or services tailored to fit the needs of a particular person. Habilitation plans are meant to outline the support a person needs, the goals s/he wants to achieve, and how a staff member can support this person to accomplish the goals. However, even with individualized plans in place, traditional habilitative services often severely restrict choices and this happens due to many factors – the time when such services start, the place where support is provided, the staff person responsible for the support, and who else might be present while the support is provided. Moreover and perhaps of the greater concern, depending on the power dynamics between the staff person and the individual receiving support, many additional choices may be also limited including, what a person’s money is spent on, what s/he prefers to eat and what kind of radio/TV programs s/he favors, when s/he goes to the bathroom, and even what this person does at any given moment throughout the day.
Putting myself in the shoes of a person receiving traditional habilitative services, I can only imagine that I would feel trapped, having little choice to make real and meaningful individual decisions throughout the day.