Journal Scan: Choice and Quality of Life
Amanda Surdock, M.A.

Editor's Note: The Journal Scan column is designed to share information from professional journals that might be useful to The Baddour Center's staff and families. The citation for this quarter's article is as follows: Neely-Barnes, S., Marcenko, M., & Weber, L. (2008). Does choice influence quality of life for people with mild in-tellectual disabilities? Intellectual and Develop-mental Disabilities, 46(1), 12-26.

magine what you would feel like if you did not have any power over what you ate, when you ate, when you en-gaged in activities, or what activities you engaged in. Most people would prob-ably be very unhappy if their ability to choose was taken away. This article looked at the idea of consumer choice for people with mild in-tellectual disabilities, and how the abil-ity to make choices influences quality of life.

Research has defined quality of life for indi-viduals with develop-mental disabilities as having eight compo-nents: interpersonal relationships, social inclusion, personal development, physi-cal health, self-determination, emotional health, individual rights, and fulfillment of material needs. These components can be difficult to define or measure, so for the purposes of this study, the authors decided to look at social in-clusion, rights and interpersonal relationships and the relationship between choice and quality of life. Past research has also shown a relation-ship between the size of living arrangements and choice, with smaller settings such as at home.



For this study, researchers interviewed a sample of people with intellectual disabilities who were receiving ser-vices in the Pa-cific Northwest. Their case man-agers were also interviewed to obtain informa-tion about their level of disabil-ity and the size and amount of control the person had over their living arrangement. Choice was measured by the individual's ability to choose their schedule, free time ac-tivities, what to purchase, and the staff they worked with. Commu-nity inclusion was measured by whether the individuals were able to shop, dine, pursue entertainment, go to church, attend community clubs and meetings, and partake in fitness activities in the community, and who goes with them into the commu-nity. The rights of interest to researchers were opening their own mail, using the phone, being alone, attending self-advocacy groups, and that staff asked permission to enter their home and bedroom. When it came to relationships, researchers asked if the participants had friends, were able to see them and family when they wanted, and if they ever felt lonely.

When researchers analyzed the data, they found that individuals with more severe intellectual disabilities had less choice and lived in larger group environments. Individuals who had the most choice also experience more inclusion and more rights. Those who lived in smaller settings also reported that staff had greater respect for their rights. As for quality of life, individuals in smaller settings reported more choice and greater quality of life.

So what does this all mean in the long run? The larger the living situation, the fewer choices and less quality of life reported by the individuals. Baddour, as a whole, is considered a large group set-ting, but within Baddour we have a variety of living arrangements ranging from 2 people to 13. Not surprisingly, this study's results indicate that those who live in the larger group homes are at risk of having fewer choices, less opportunity to exercise their basic rights, and a decreased quality of life. Baddour's philosophy, though, is that it is not the place itself that determines how people feel, it is the practices used in that place. With that in mind we, as staff, should work hard to ensure that our residents are presented with as much choice as is possible. Some of the suggestions are very small things that are easily implemented, such as knocking on doors and respecting a "no" response when it is given; finding a place to allow people private phone calls, and arranging for time to be completely alone. Many of the practices the authors advocated are already in widespread use at Baddour, such as residents opening their own mail and choosing their own recreation activities. And, of course, some of the suggestions are a bit harder, but are worth a good brainstorm. Could we find ways to offer more choice to residents regarding their jobs? Their roommate selections? The staff with whom they work? Their schedules? Some of those questions sound like big ones, but TBC has a long-standing history of creatively meeting the needs of our residents.

Overall, this study points out some things we are already doing well, some things we can do to im-prove quality of life, as well as some things that we might want to think about for the future. Our job is now to take this information, and be especially mindful of how we interact with the residents, and pay attention to the amount of choice and respect offered to them on a daily basis.