by Martin Heng
A peer-informed, peer-delivered capacity-building project
One of the many things to come to terms with after a spinal cord injury is a loss of independence. In general, the higher the level of injury, the greater the loss of physical independence. Quadriplegics, like myself, usually need more assistance with everyday living than paraplegics. One of the goals of rehab is to help people with SCI regain as much independence as possible. Still, only so much can be achieved in most people’s relatively short time in rehab. The journey towards regaining independence gets underway only when you move back into the community and face everyday realities and barriers.
The foundations are laid in rehab primarily by allied health professionals – nurses, physios and occupational therapists. However, it has long been recognised that peer support plays a significant role in helping people with SCI get their lives back on track. People who have lived with their injury for years, sometimes decades, can teach the skills, tips and tricks they have accumulated through lived experience. They also act as role models, inspiring others by showing them what can be achieved despite a life-changing spinal cord injury.
This underpins the philosophy behind the peer-led Skills for Independence program, specifically designed for people with spinal cord injury or similar conditions, which I have been fortunate enough to be a part of over the last year or so.
The Skills for Independence course has its origins in the UK with the Back Up Trust, a leading UK charity that seeks to inspire people affected by spinal cord injury to get the most out of life. Each year, the Back Up Trust reaches more than 1000 people with services designed and delivered by people themselves affected by SCI to build the skills, confidence and independence to get people with SCI to live life to the fullest extent possible. They offer wheelchair skills training, a mentoring service, telephone support, life skills and activity courses, and support returning to work or education.
Dave Ball volunteered extensively for the Back Up Trust in numerous roles, including wheelchair skills trainer and group leader, from 1995 until he migrated with his family to Melbourne in 2016. Dave delivered Back Up wheelchair skills courses and trained new wheelchair skills trainers. Tim Rushby-Smith, who became a paraplegic in 2005, was one of his trainees and became a wheelchair skills trainer and course leader himself, also coauthoring the Back Up Trust’s Wheelchair Skills Manual.
Dave and Tim brought their knowledge and expertise as specialist peer trainers to Australia, together with Dave’s wife, Larnie Ball. Larnie has almost three decades’ experience in the disability field, backed up with qualifications, including experience in adaptive recreation programs, life coaching, course coordination, and group leader and trainer roles. The three have developed the Skills for Independence course for the Australian context.
The final member of the team is Dr Gillean Hilton, an occupational therapist and clinical researcher with over 20 years’ experience working in SCI rehabilitation as a clinician, researcher and project manager. Dr Hilton acts as the project’s impact, evaluation and research lead.
The Skills for Independence program is part of AQA Victoria’s Living Well project, developed with assistance from a grant from the NDIA under its Information, Linkages and Capacity-Building Program. The Living Well project has similar aims and objectives as the Back Up Trust, with a similar emphasis on peer-informed, peer-led and peer-delivered activities in the community, founded on goal-setting, strength identification and skills building.
The Skills for Independence program is run as a residential course, with participants brought together for an intensive and broad-ranging learning experience. It’s designed as a residential course because group bonding is essential for the best outcomes: the more comfortable people are with each other, the more likely they are to share their stories and experiences. For this reason, although the course is highly structured, icebreakers and games are essential, as is socialising during evening sessions and over meals. While the course is led and facilitated by specialist peer trainers, there’s also a lot of peer-to-peer sharing and learning, which gives participants an additional sense of empowerment.
The core of the course covers manual wheelchair skills and caters to wheelchair users of all abilities. Participants engage in structured, technical sessions and games to tackle increasingly advanced skills. Particularly with the more recently injured, it’s great to see how quickly wheelchair skills can be progressed in the safe and supportive environment provided by the program. The course assumes its participants have no prior knowledge and starts with the basics: efficient pushing techniques and crossing a small threshold, simulated with a piece of rope. From there, participants learn how to mount a small platform (simulating a kerb), achieve a back-wheel balance, go down an incline in back-wheel balance, get down from a small platform in back-wheel balance, then “locking in”, going down a step, then going down two steps. These are instrumental techniques when encountering obstacles in the community and are often barely touched on while still in rehab.
While the emphasis is firmly on peer-led learning, wheelchair-using participants are joined by able-bodied “buddies”, who can be support workers, occupational therapists or family members. The buddies offer assistance with equipment set up and, most importantly, safety. “Spotting straps” held by buddies and attached to the back of wheelchairs allow participants to practise potentially dangerous manoeuvres – such as going down a step while in back-wheel balance – in safety until they are confident enough to attempt them on their own. At the same time, these exercises build the capacity of buddies themselves to offer support to wheelchair users. What’s more, the buddies learn the same wheelchair skills as participants, which gives them an excellent understanding of the techniques involved and the psychological barriers wheelchair users face when attempting new techniques. I found it remarkable that able-bodied buddies often had less confidence in tackling difficult manoeuvres than wheelchair users!
However, the course covers so much more than just wheelchair skills. A transfer session covers chair to bed, chair to couch, chair to floor and chair to car – and back, of course! Again, having buddies around helps with safety and manual facilitation, where participants are less skilled. Other practical sessions cover dressing, skin care, diet, exercise and activity. There are sessions to discuss pain and fatigue management, physical and mental well-being, body image, intimacy and sex, and staying away from home. These sessions benefit particularly from peer-to-peer sharing, facilitated by the mutual trust fostered by the residential setting. Where circumstances – and weather – allow, participants also go out into the community to experience real-world challenges.
A pre-course questionnaire identifies participants’ expectations and aspirations: What skills would improve your independence? What do you want to learn? What are your future goals and aspirations? The questionnaire allows the trainers to tailor the course to meet participants’ needs and, importantly, to gauge in evening debriefs what gaps remain and where participants might need additional support. It also allows for measuring outcomes at the end of the course. And one of the final sessions encourages participants to set future goals based on their course experiences.
What about power wheelchair users? Well, one of the great things about the Skills for Independence program is that it does truly build capacity, identifying and training new trainers to expand the program. I was lucky enough to be chosen to become a trainer in a power wheelchair skills–based course that’s under development. What’s more, a constant refrain during the course is “verbal independence”: developing the verbal skills necessary to instruct family, friends, support workers and strangers on how best to support you in the way you want to be supported.
I have been so impressed with the Skills for Independence team’s vision, drive, enthusiasm and professionalism. The three courses I have attended allowed me to witness first-hand the immense benefits, both tangible and intangible, that these courses can bring to participants. The care and empathy shown by the team are testaments to the integrity and commitment to the betterment of participants’ well-being that goes far beyond mere professionalism. It has been an honour and privilege to become part of that.