Powered mobility for people with profound cognitive disabilities leads to developing occupational performance

At the start, it was impossible to imagine that a study on powered mobility for a marginalized group of children would expand to a framework for tool use regarding learning and development of occupational performance.

It was a novel idea to provide children who have profound cognitive disabilities with opportunities to practice using a joystick-operated powered wheelchair. This idea originated from experiences in a paediatric rehabilitation team in a rural area of north Sweden. My challenge as an occupational therapist was to find ways to provide opportunities for stimulating and meaningful activity for children who had multiple and complex disabilities. Fortunately, several extraordinary experiences from my practice inspired my insight that access to powered wheelchair exploration could result in the unexpected development of occupational performance in children with profound cognitive disabilities (Nilsson, 2007).

My research began with case studies of two preschool children in 1993 and the major question: What can be achieved if people with profound cognitive disabilities obtain access to practice in powered wheelchairs? The results showed that the mobility experience promoted increased wakefulness, curiosity in hand use, and a growing understanding of cause–effect relationships. These most surprising and positive achievements led to further studies exploring the benefits of access to practice in joystick-operated powered wheelchairs. Over the years, the project engaged 109 children and adults with varying degrees of cognitive disabilities and 17 typically developing infants aged 3–12 months in the exploration of the powered mobility experience. The primary finding was the development of the Driving to Learn intervention (Nilsson, 2007).

An important finding was the discovery of the learning process needed to use a joystick. Longitudinal constant comparisons of observations showed that all participants went through a similar learning process, but on their own individual trajectories and at their own pace. Simultaneously with the understanding of the eight-phase learning process, an instrument emerged for assessing growing consciousness of joystick-use and a set of facilitating strategies for each phase of the process (Nilsson, 2007; Nilsson et al., 2011a). A surprising finding was that as many as 8 out of the 45 participants with profound cognitive disabilities reached phase six (goal-directed driving) or above in the tool-use learning process. This unexpected outcome confirmed that the Driving to Learn intervention could be useful to promote development in people for whom others had very low expectations for changes in behaviors, activity, and occupational performance.

In the search for facilitators and hindrances for learning joystick-use it became evident that there were certain properties necessary for enabling achievements and surmounting plateaus in development. These properties needed to be present in both therapists and learners, the most important and interdependent of which were motivation, endurance, responsiveness, adaptability, and having useful and predictable resources. These findings showed that powered mobility practice could provide opportunities for children and adults with profound cognitive disabilities to grow more conscious of tool use and develop a sense of self and wellbeing—which were achievements exceeding preconceived expectations (Nilsson, 2007; Nilsson et al., 2011a).

Outcome measures for powered mobility interventions are essential for evaluating progress in development and learning. Josephine Durkin, an occupational therapist from the United Kingdom, focused her research on a powered mobility intervention and created an outcome measure for children with multiple and complex disabilities (Durkin, 2009). Our collaboration on instrument development was initiated after we completed our dissertations. In a grounded theory study, we merged and modified our two instruments, resulting in a new tool: The Assessment of Learning Powered mobility use (ALP), which includes the ALP-instrument with eight phases and three stages (exploring functions, sequencing, and performance), and the ALP-facilitating strategies (Nilsson and Durkin, 2014). The ALP-instrument is used for assessment of a person’s actual main phase of understanding tool use; this knowledge guides the choice of appropriate ALP-facilitating strategies for promoting a person’s learning. A new not-yet published study testing the inter-rater reliability of the ALP tool in practice settings resulted in a weighted kappa value of 0.85, which is considered a high degree of agreement. This result replicated findings in a study of inter-rater reliability of the original eight-phase instrument ‘growing consciousness of joystick-use’ (Nilsson et al., 2011b).

Process-based outcome measures can be used for assessment of and for learning, as they measure actual phases of the learning process for documentation and provide guidance regarding appropriate challenges for facilitating learning. The ALP tool is intended to assist practitioners to find ways to empower children, adolescents, and adults through powered wheelchair practice. Understanding of the general tool-use learning process is of the utmost importance to enable appropriate facilitation at the individual level. A review of measures for powered mobility intervention acknowledged the ALP tool (Nilsson and Durkin, 2014) and our previous instruments (Durkin, 2009; Nilsson et al., 2011a) as the only process-based measures that were presently available (Field and Livingstone, 2018).

An exploration of factors facilitating ALP-tool implementation led to the understanding of the process of cognizing (Nilsson and Durkin, 2017). To cognize is to perceive, become aware of, and to know how to use a tool. The process of cognizing tool-use learning also involves integrating tool use in a variety of situations. The properties critical for successful implementation are motivation, confidence, permissiveness, attentiveness, and co-construction. Motivation is necessary to try, confidence to ratify it for yourself and others, permissiveness to try it in your own way, attentiveness to observe reactions and change, and co-construction to get all on board and collaborate towards common and individual goals. The findings are applicable for practitioners’ implementation of new interventions and assessments, and for clients’ compliance and adherence to methods and interventions in which they participate. We may have good ideas about therapeutic and research applications, but to implement them in a consistent and long-lasting way, we need to communicate, collaborate, and have trust in what we do. We also need readiness to change and modify what is not working well conjointly with our collaborators and appliers of methods and interventions.

The application of the ALP tool took a new direction in 2016 when two speech-language pathologists in the United States of America were introduced to the ALP tool and recognized its value in the arena of augmentative and alternative communication (AAC) (Nilsson et al., 2018). This adoption and modification are most encouraging, as they strengthen my belief that the understanding of the tool-use learning process is a framework that can be beneficial for developing occupational performance in many arenas, and for people in general regardless of age, body functions, and capability. I hope this introduction will inspire testing of the ALP tool in new fields and I invite and welcome discussions on adoptions, changes, and/or modifications. For more information on Driving to Learn and the ALP tool, please visit www.lisbethnilsson.se/en.