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Post-school quality of life (summary)

Quality
of
life
after
leaving
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Background Evaluations of post-school outcomes for young people with disabilities have shown that they drop out of school more frequently than their non-disabled peers, rarely enrol in post-secondary education and often experience unemployment and poverty. However, many people with disabilities also report satisfaction with the people in their lives, participation in various recreational activities and a sense of optimism about the future. Unfortunately, this literature rarely addresses outcomes for individuals with complex communication needs who use AAC.

What was the aim of the study? This study aimed to evaluate the experiences of individuals with complex communication needs, who had used AAC whilst in education, after they left school. The study aimed to determine the individuals' objective outcomes such as employment, education and living circumstances, their subjective outcomes such as quality of life, their satisfaction with their modes of communication and any relationships between these outcomes.

What did the authors do? The authors invited young people who had completed high school in British Columbia, Canada between 1998 and 2003, and who had received communication technology during that time, to take part in the study. Packages were posted to the thirty available young people with two surveys to complete. These packages included a Communication Survey and a Quality of Life Profile. Participants were instructed to complete the surveys as independently as possible, and if helpers such as parents assisted in filling out the surveys, they were instructed to do so from the perspective of the young person.

The authors also conducted interviews with some participants in order to gain a more detailed view of the young person's experiences after leaving school.

What did they find? Information about eight young people was returned via paper surveys, and four families agreed to participate in interviews. The young people ranged in age from 19 to 24 years and lived primarily in urban areas. All but one spoke English in the home, and the participant group consisted of six women and two men. Half the participants had a diagnosis of more than one disability, including autism, intellectual disability, deafblindness, cerebral palsy and Rett syndrome.

All eight young people required support for activities of daily living, and only one young person lived in her own residence. None were employed or in education, and only one was looking for work. Parents reported a need for greater resources in vocational areas and commented that services were inadequate because they were not able to cope with the individual needs of the young people.

Results from the survey on quality of life indicated that all but one participant scored in the 'adequate' or 'very good' range. However, only two participants were able to respond positively to 'things I do to improve myself'. Participants in interviews reported that young people felt 'stuck' in their lives and had few resources to grow on a personal level.

All of the young people used many different means of communication, including gestures, vocalisations, eye blinks and signing. Five young people used a form of aided communication such as communication books or computers. Only one young person used the AAC device that was provided to her in school, and she was the only participant who reported satisfaction with her current method of communication. The other young people did not use the AAC devices they had in school for a variety of reasons: the device was felt to be inappropriate for the young person, the device was too expensive to purchase, it was not possible to purchase the device when leaving school or the device had broken. Participants felt they needed better access to AAC resources and communication support. Three of the four families who were interviewed reported that the young person frequently engaged in problem behaviours, and this was attributed to a lack of any successful way for the young person to express themself. Overall, the quality of communication for all but one participant was considered poor and required remediation.

There was a strong relationship between the young people's quality of life and the quality of their communication. Previous studies have reported a similar relationship between these two factors.

Cautions: Only eight young people took part in this study, and these people were from a very restricted subset of people who use AAC. Their opinions therefore may not represent the entire population of young people leaving school who have complex communication needs. Importantly, the surveys in this study were, for the most part, completed by parents of the young people who used AAC. It is impossible to determine the extent that the views and experiences of the young people themselves were accurately reflected in the survey data.

Conclusions: The results of this study demonstrate the urgent need for high-quality services for individuals with developmental disabilities who have left school. Support for the use of communication technology is also paramount, as gaining the device itself is only half of the equation for successful communication. Finally, post-school transitions need to be considered and planned long before students who use AAC leave school.


Things you may want to look into:

Employment FAQs

Case story: funding a communication aid

Jeff's experiences after leaving school

Mark's experiences in day centres

Added to site January 2014


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