(Published in Team Rehab Report, May 1995.)
Linda Petty, B.Sc, O.T.(C). and
Stefanie Sukstorf Laurence, B.Sc, O.T.(C)
An effective pediatric power wheelchair prescription requires gathering input from appropriate team members, identifying the child's needs and having the full range of power chair controls and seating components available for trial.
Identifying a child who has the potential to drive a power chair with special controls often presents a dilemma for therapists. While a particular child may demonstrate basic driving ability. these skills may be insufficient to justify purchasing a chair. Complicating matters further is that the most effective training is with the prescribed equipment itself, which is usually not readily available.
This problem may be addressed by training at a treatment center on an outpatient basis, or even on an inpatient basis for an intense period of time. However, in these nontypical environments the child may not demonstrate his or her true skills, and the parents or caregivers do not get a genuine picture of how the chair will fit into the family's home and lifestyle.
Whenever practical, a team of two occupational therapists at Bloorview Children's Hospital, Toronto, Canada, sets up power chair training in the client's home environment. The family can then train the child in familiar surroundings as it fits their schedule. Due to the harsh Canadian winter, most home training programs occur in the summer to allow the child to access open spaces outdoors, and to avoid the demands of school schedules.
Equipment for the training is supplied from a number of sources, including temporary loans from rehab technology suppliers (RTS), manufacturers, school programs and devices acquired by Bloorview through purchases or donations. One local RTS now offers an innovative rental program, where the rental payments can be applied toward the purchase price if a system is later purchased.
Clients are generally identified by community therapists who are invited to participate in the assessment and training program. Once a driving routine has been established at Bloorview, based on a collaborative control access and seating assessment, the team trains the family and any government-funded home service workers, to carry out the actual driver training. Depending on the needs of the family, this may range from general guidelines and suggestions to a home visit to outline a concrete program based on the home and surrounding environment.
Seeing the child in his or her own environment quickly points out any motivators, obstacles and solutions both for the team and the family. The Bloorview team provides ongoing support to the family and their local therapists throughout the training period, through phone calls or home visits. Reassessment, either in the home or at Bloorview, after a specified training period, determines if a prescription can proceed, requires revision or more training, or is deemed inappropriate by the family and the team. A training program that extends beyond the excitement of the initial set-up provides a more accurate picture of the client's cognitive and motor skill development. Motivation to carry through with power chair driving can be a greater determining factor than physical and cognitive skills.
In today's world of tightening health care dollars, training prior to a final prescription may be a key to getting the most value for the money. The results of a training program are a clear indication of either the validity or inappropriateness of a power chair prescription.
Many factors preclude a large-scale undertaking of this program, such as therapists' caseload demands, traveling long distances for home visits and equipment availability. However, the efforts put into this program are justified by the exposure of the community therapists and RTSs to power wheelchair control access, seating and training-and ultimately, by the independence and confidence gained by both child and family.
Overcoming Fears: A Case Study
One such success story is Andrew, a 16-year-old Bloorview resident with spastic quadriplegic cerebral palsy. Andrew drove a power chair with a scanner and head switch, without the control needed to take his head off the switch to stop. Needless to say, the walls, furniture and Bloorview staff were often victims. Andrew, who had age-appropriate cognitive skills, was the first to admit his fear of the power chair and avoided its use.Andrew is now mobile and
independent, driving his
Invacare Arrow power chair
with a scanner and single
head switch. A contoured
modular seating system
provided the proper
positioning for him to
access his power chair
controls and his Light
Talker.
This could have been the end of Andrew's use of a power chair, resulting in dependent mobility and limiting the number of places he could live. When reviewing his options, Andrew decided to limit his goals to communication through a single switch-accessed Macintosh LC computer with a Ke:nx interface and Co:Writer and Write:OutLoud software, all from Don Johnston Inc., and a Prentke Romich Light Talker, a voice output communication aid (VOCA). His practice of switch use in these less-threatening tasks resulted in an improvement to his head control and self-confidence.
Two years after the decision to abandon the power chair, the subject reemerged; Andrew had mastered the switch-activated VOCA and wanted more independence. Once again he was the first to admit his fear and reminded everyone of his reputation for climbing the walls. However, using the Bloorview Assessment Chair allowed seating and electronics to be set up for assessment, trials and modifications without any obligation to purchase equipment.
Andrew's dynamic tone when activating a switch to move the chair quickly demonstrated that the planar plywood and foam seating from his manual chair did not provide him with stability when excited or stressed by the sensation of moving himself in space. The same level of extensor tone was not present in the less stressful stationary tasks of using the computer or VOCA. His seating was changed to a contoured, modular system with padded shoulder and arm restraints, and toe loops. The system had an Invacare Avanti personal back, Jay cushion with abductor, adductors and hip guides, and an Otto Bock large headrest. The seating and restraints allowed Andrew to sit without exerting effort to control his trunk or extremities.
Opportunities to try out the power chair for limited periods of time in controlled environments, coupled with Andrew's determination, resulted in increased motor control and self-confidence, and ultimately improved proficiency in power chair use.
Andrew is now 22 years old and has moved into a residence in the community. Once a candidate for a neck collar to provide head control and facing a future of dependency, he drives an Invacare Arrow power chair using a scanner and single head switch. He no longer strains on the restraints and can use the modular seating in a more upright position, both in his power and manual wheelchairs. A second head switch controls a Light Talker, mounted to his chair with components from Communication Station and Daedalus Technologies' DAESSY. His options for living have greatly expanded...and the walls can breathe a little easier .
Linda Petty, B.Sc, O.T.(C), works in the Communication and Assistive Technology Department at Bloorview Children's Hospital. She specializes in assessing and developing control interfaces for powered mobility, as well as for written and face-to-face communication for children and young adults.
Stefanie Sukstorf Laurence, B.Sc, O.T.(C), is the coordinator of Seating, Mobility and Equipment at Bloorview Childrens Hospital, 25 Buchan Court, Toronto, Ontario, Canada M2J 4S9; (416) 494-2222; fax: (416) 494- 2736.