1999 Conference Proceedings

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Susan Balandin & Betty Alexander
Centre for Developmental Disability Studies
PO Box 6, Ryde, NSW 1680, Australia.

The Functional Independence Measure (FIM) and equipment lists were used to investigate whether it is possible to estimate current and future assistive equipment needs and costs required by 200 adults with cerebral palsy. The Functional Independence measure (FIM) measures 18 items over 6 different domains: a) self care, b) sphincter control, c) mobility, d) locomotion, e) communication, and f) social cognition. The individual is scored on an ordered scale of 7 down to 1 on each item in each domain. A score of 7 is achieved if the individual is able to perform the task independently and 1 indicates that the individual is fully dependent on another to complete the task. The skills assessed by the FIM have been identified by both individuals with cerebral palsy and investigators as being areas in which increased problems maybe experienced during the ageing process (Balandin & Morgan, 1997; Overeynder, 1994).


Each participant was assessed using the FIM. Separate lists of equipment were maintained and the current cost of the equipment was calculated from catalogues. A general repair and maintenance cost was calculated, based on the average repair costs for different pieces of equipment during the last year. A total of 200 adults with cerebral palsy were interviewed about what equipment they used to complete FIM tasks at their work, day options, and in their homes, this included congregate care facilities and community settings.


Only 3 (1.5% ) participants in the study were fully independent with a score of 7 on all mobility items. A total of 107 (53.5%) had a score of 6 for locomotion, meaning they are able to move around the community either walking with some assistive device or with a manual or powered wheelchair. A total of 25 (12.5%) participants were able to perform at least one or more of the mobility items on the FIM independently with equipment, however none of these were able to access stairs without the support of another person, if at all. A total of 65 (32.5%) were unable to complete any mobility tasks without attendant care support. The numbers of participants at different levels of independence for mobility items are summarised in Table 1. Table 1: Numbers of participants at different levels of mobility independence Independent all items Independent with equipment for all locomotion Independent with equipment for some mobility items Need attendant care for all mobility items 3 107 25 65

Mobility costs

The total cost of mobility equipment utilised by the 107 participants who were independent for locomotion totalled $1,047, 214 with a range of $25.00 to $27,565 and an average of $9,787 per participant. Equipment in the high cost range included both a power and manual wheelchair, a hoist for bath, toilet, a special bath and a shower trolley as well as continence pads and small pieces of equipment to aid in eating and dressing. The total cost of equipment for the remaining 90 participants was $ 715,118, with a range of nil to $28,604 and an average of $7,689.

Mobility Maintenance

Participants with a mild disability who needed special foot wear and orthotics to assist their mobility spent $100-$192.00 per year on repairs to boots and calipers. The most common repairs to manual and powered wheelchairs repairs over the twelve month period were to brakes, and tyres. Additional repairs for power chairs were control box repairs and replacement of batteries and chargers, with an average cost of $350 per year for most participants. For consumers with a severe disability, repairs to cuffs, straps, head rests, thoracic support, and inserts were the most common of all repairs to manual wheelchair seating.

Consumers who required a new insert were charged a range of $500- $1,550 depending on the amount of customisation required for their manual or .


Very few participants were fully independent. It is beyond the scope of this project to examine whether some of the older participants had greater levels of independence when they were younger. However, age did not appear to correlate with levels of disability. It is important that individuals with cerebral palsy have access to sufficient funding to allow them to maintain as much independence as possible for as long as possible. From the results it is evident that the average cost of equipment is more for individuals who have a high level of independence and therefore require low levels of attendant care. We know that individuals with cerebral palsy lose functional ability as they age, therefore we expect the need for equipment will increase as the participants in this study age. It is vital that not only is there an adequate amount of funding for equipment, but also that the amount is flexible to allow for changes in independence. The cost of communication equipment varied. Again it is important that adults with cerebral palsy have the communication equipment that they need. A computer with voice output may allow an individual to work or attend further education and will certainly assist him/her to participate more fully in the community.

It is well documented that there is a great deal of equipment that is not in use because it needs repair and maintenance (Mirenda, 1992). It is vital that there is funding for communication equipment repairs. If this equipment breaks down the consumer is effectively left without a voice and consequently loses independence and functional ability. Thus, funding for repairs and maintenance must be available if individuals are to maintain their levels of independence or if they are to be cared for properly.


Balandin, S., & Morgan, J. (1997). Adults with cerebral palsy: What's happening? Journal of Intellectual and Developmental Disability, 22(2), 109-124.

Mirenda, P. (1992). School to postschool transition planning for augmentative and alternative communication users. Seminars in Speech and Language, 13(2), 130-142.

Overeynder, J. (1994). Aging and cerebral palsy: Pathways to successful aging. The UCPA Networker.

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