Personal assistance, income and employment: The spinal injuries survey instrument (SISI) and its application in a sample of people with quadriplegia

Introduction: Our aim was to ascertain what effect access to personal care package (PCP) has on the labour market activities of people who have a spinal cord injury (SCI). We developed a new instrument called the spinal injuries survey instrument (SISI). The SISI is a 35-item instrument, which contains items on health, education, employment, along with measures of personal assistance, mobility and psychological attribution style. Materials and methods: The SISI was administered, with the Short Form 36 (SF-36) health status instrument, to 250 people with an SCI. The response rate was 72%. A retrospective, matched case-control sampling approach matched individuals who received a PCP, with a cohort who did not. The matching criteria included the site and severity of spinal lesion, age and gender. Results: Although data on the reliability of the instrument are currently lacking, our empirical results are consistent with other studies: (1) mean annual health care costs (AUD$8741) are comparable with Walsh's estimates (2) SF-36 data support Kreuter's contention that mental health is resilient to SCI and (3) a post-injury employment rate of 29.7% corroborates Murphy et al. We present additional data describing income, educational attainment and family support. Discussion: Our discussion borrows a conceptualization of disability by Sen, that includes both an 'earning handicap' (an impediment to earn income) and a 'conversion handicap' (an impediment to the enjoyment of income). Our application of the SISI provides evidence of both. The labour income of people with quadriplegia is AUD$10 007 per annum, while diminished health status, increased out-of-pocket health expenditure and loss of time suggest a conversion handicap. © 2008 International Spinal Cord Society All rights reserved.