The work of Wehmeyer, Garner, and Bolding supports the idea that settings play a crucial role in determining levels of self-determination for people with disabilities. Importantly, their research identified that perception of choice is the greatest predictor of self-determination. This suggests that the more an individual learns of their ability to make choices for themselves, the more they will make them. Remote supports can be a part of settings that empower individuals to make decisions, expand their perception of choice, and make more decisions, ultimately increasing their levels of self-determination.
As Disability Awareness Week begins this March, we wanted to take a deep dive into self-determination from a more academic perspective, particularly the work of Dr. Michael L. Wehmeyer and Dr. Nancy W. Garner. In 2003, they published "The Impact of Personal Characteristics of People with Intellectual and Developmental Disabilities on Self-determination and Autonomous Functioning."
In this paper they explored the effects of, you guessed it, personal characteristics of people with disabilities on self-determination. What personal characteristics? Why should we care about those effects?
There was an effort in the late 20th century to investigate self-determination as a concept. What did self-determination mean? How do our conceptions of self-determination and the ability of people with I/DD to exercise it fit with the real world?
Along with the social conception of disability (which argues that individuals are disabled by the world, not as an inherent characteristic of themselves) there grew new conceptions of self-determination, many of which focused on the settings in which an individual lived and worked. It stood to reason that there was a good chance that different settings may impact an individual’s ability to exercise self-determination.
This focus on setting also echoed the movement within the disability services industry toward more community-based living settings for individuals with I/DD, on the belief that setting had an important impact on many different factors which contribute to quality of life.
Wehmeyer and Garner’s paper was the third in a three-part research effort intended to examine the effects of setting on self-determination and personal choice specifically.
The first paper explored whether individuals living in different types of settings, who had similar IQ scores (within five points of one another), would demonstrate different levels of self-determination. The results were clear. There were significant differences between those matched groups of people, which indicated to researchers that setting may play a significant role in the self-determination of an individual (Wehmeyer & Bolding, 1999).
However, they couldn’t rule out the possibility that some people were simply more self-determined than others. If you compare Billy and Jim, and Billy has a higher score of self-determination, then it could be that Billy is just more self-determined as a person regardless of their respective settings.
To explore this, the researchers conducted a second study. This one sought to see whether it was just differences in personal characteristics causing those results in the first study. To do this, they measured levels of self-determination of individuals before and after they moved from more restrictive to less restrictive living/work settings.
What did they find? They discovered that individuals consistently displayed higher levels of self-determination in the less restrictive settings, indicating that setting did, as they suspected, play a crucial role in predicting for levels of self-determination among people with disabilities (Wehmeyer & Bolding, 2001).
Although setting plays an important role, certainly personal characteristics affect the degree to which a person is self-determined to some extent. It seems common knowledge that qualities such as IQ would play an important role in how self-determined someone is.
Their third study looked at this, evaluating the relationship between personal characteristics and self-determination. What they found may surprise you.
Firstly, they found that perception of choice was the most significant predictor of self-determination Secondly, they found that IQ score was not a significant predictor of self-determination. This indicated that people of all intelligence levels can be empowered to take more meaningful control of their lives and that IQ score alone should not be a factor to consider when deciding to enhance self-determination (Wehmeyer & Garner, 2003).
These findings are significant and have broad implications for the way we, as organizations within the industry, work to help improve the lives of the people we serve.
While it is commonly understood now that movement from more restrictive, higher occupancy living environments to less restrictive, community-based arrangements produces better outcomes for people with disabilities, the research we’ve explored indicates we should consider other factors about those settings as well.
One factor we should consider is technology, and how it can be used to help achieve those better outcomes we’re looking for. In fact, Wehmeyer and Garner mention technology as one such factor of an environment with the potential to enhance self-determination of people with disabilities.
Remote supports connects people with disabilities in real time to remote support professionals (RSPs) via technology placed in the home and a central remote support facility. Through this technology, individuals enjoy a greater degree of independence - which, for the purposes of this article, we’ll define as absence of physically-present staff – which in turn is conducive to greater self-determination.
How does this occur? When an individual has more hours without staff in the home, they have more opportunities to accomplish activities of daily living themselves. From household chores such as washing dishes, taking out the trash, and cleaning, to broader activities such as inviting over friends and family, cooking meals, and spending leisure time, individuals who don’t have physically present staff have a greater opportunity to choose what they’re going to do as well as how and when they’re going to do it.
This is not to say that staff presence is the problem with residential settings providing lower levels of self-determination. Staff provide necessary help and remain (and will forever remain) an integral part of the support system for people with I/DD. However, there are three different ways staff can be unhelpful when it comes to self-determination. Two of those three are well-intentioned. Dr. Roger J Stancliffe notes in his article Community Living-Unit Size, Staff Presence, and Residents’ Choice-Making:
“In settings where staff members are in attendance continuously, their very presence may serve as a barrier to exercising choice freely or offer an easy alternative to deciding for oneself. Residents may be reluctant to voice or act on their true preferences while staff members are present but may defer to staff opinion, seek staff approval for a course of action, or find it easier if staff members make the decisions.” (Stancliffe, 1997).
This suggests that staff can be (1) making choices for individuals in a paternalistic way, (2) making choices for individuals because the individuals think it’s easier to defer to staff’s opinion, or (3) be influencing the individual’s willingness to voice or act on preferences by their mere presence. Whatever the case may be with a given staff person, chances are that their presence is, in some way, affecting an individual’s level of self-determination.
We all hope that staff are well-trained and well-intentioned, aiding individuals to exercise self-determination, but if their very presence affects the decision, it stands to reason that without physically-present staff, the setting would be different in a way that could promote greater self-determination.
Remote support providers like Night Owl have had anecdotal evidence of this empowering quality of remote supports for years. There are numerous examples of individuals who report finding subtle but meaningful choices are returned to them when they begin using our services. These situations may seem trivial to the outside observer, but in aggregate they comprise the majority of choices an individual makes throughout their day.
With remote supports, individuals are supported by an RSP in real time, but they aren’t physically present in the home. RSPs don’t watch an individual’s TV, sit on their couch, or offer easy answers to choices that should be made by the individual. This physical absence (but on-demand, real-time interaction) creates a setting where more of those daily decisions are not influenced by the presence of staff in the home.
What’s more, there’s evidence to support the notion that giving individuals more choice opportunity creates a positive cycle of increased self-determination. Wehmeyer and Garner found that "only perceptions of choice opportunity (from among four variables, including IQ score) predicted membership in the high self-determination group.”
If, for example, a team decides to try remote supports with John Doe to help him exercise greater self-determination, then John Doe’s perception of choice opportunity – the knowledge that he can make decisions for himself – would grow as he makes more decisions. This creates a positive feedback loop. More choices made leads to greater perception of choice opportunity which leads to greater self-determination then to more choices and so on.
Of course, the impact of remote supports on any given individual’s self-determination is subject to many other factors as well, including the particular type of remote supports being provided. Additionally, research into the effects of remote supports on self-determination as such is extremely limited, but there is more coming on the horizon as the service expands. We at Night Owl hope to see more work done in the future to quantify the positive impacts of remote supports, especially as it relates to self-determination of the individuals using it.
But until then, as you, professionals, teams, and organizations, continue to explore ways to improve outcomes and improve the lives of the people you serve this Disability Awareness Month, we hope you seriously consider remote supports as helpful tool to assist you in achieving those outcomes.
Stancliffe, R. J. (1997). Community living-unit size, staff presence, and residents' choice-making. Mental Retardation, 35(1), 1–9.https://doi.org/10.1352/0047-6765(1997)035<0001:clsspa>2.0.co;2
Wehmeyer, M.L., & Bolding, N. (1999). Self-determination across living and working environments: A matched-samples study of adults with mental retardation. Mental Retardation, 37(5), 353–363. https://doi.org/10.1352/0047-6765(1999)037<0353:salawe>2.0.co;2
Wehmeyer, M.L., & Bolding, N. (2001). Enhanced self-determination of adults with intellectual disability as an outcome of moving to community-based work or living environments. Journal of Intellectual Disability Research, 45(5),371–383. https://doi.org/10.1046/j.1365-2788.2001.00342.x
Wehmeyer,M. L., & Garner, N. W. (2003). The impact of personal characteristics of people with intellectual and developmental disability on self-determination and autonomous functioning. Journal of Applied Research in Intellectual Disabilities, 16(4), 255–265.https://doi.org/10.1046/j.1468-3148.2003.00161.x