Ageing, Disability and Home Care, Department of Family and Community Services NSW Acquired Brain Injury Research Project Final Report

October 2010

The information, statements, statistics and commentary (together the 'Information') contained in this report have been prepared by PwC from material provided by ADHC, and from other industry data sources external to ADHC. PwC may at its absolute discretion, but without being under any obligation to do so, update, amend or supplement this document.

PwC does not express an opinion as to the accuracy or completeness of the information provided, the assumptions made by the parties that provided the information or any conclusions reached by those parties. PwC disclaims any and all liability arising from actions taken in response to this report. PwC disclaims any and all liability for any investment or strategic decisions made as a consequence of information contained in this report. PwC, its employees and any persons associated with the preparation of the enclosed documents are in no way responsible for any errors or omissions in the enclosed document resulting from any inaccuracy, misdescription or incompleteness of the information provided or from assumptions made or opinions reached by the parties that provided information.

The Information contained in this report has not been subjected to an Audit and PwC acknowledges that changes in circumstances after the time of publication may impact on the accuracy of the Information. The Information may change without notice and PwC is not in any way liable for the accuracy of any information used or relied upon by a third party. The information must not be copied, reproduced, distributed, or used, in whole or in part, for any purpose other than detailed in our Engagement Contract without the written permission of ADHC and PwC.

Liability is limited by a scheme approved Professional Standards Legislation.

ADHC Acquired Brain Injury Research Project

List of Abbreviations

ABI ABS ACC

ACI

ACP ACPDU ADHC AIHW ARBIAS AROC BIAA BIA NSW BIANZ BIRD BIRP BIRS CALD DHASI DHCS DCS HACC HASI HNP ISP LTCSA MVA NGO NSW NZ PwC RPT SDAC SSCIS TAC TBI

Acquired Brain Injury Australian Bureau of Statistics Accident Compensation Corporation Agency for Clinical Innovation (formerly Greater Metropolitan Clinical Taskforce (GMCT)) Attendant Care Program Attendant Care and Physical Disability Unit Ageing Disability and Home Care Australian Institute of Health and Welfare Alcohol Related Brain Injury Australian Services Australasian Rehabilitation Outcomes Centre Brain Injury Association of America Brain Injury Association of New South Wales Brain Injury Association of New Zealand Brain Injury Rehabilitation Directorate Brain Injury Rehabilitation Program Brain Injury Rehabilitation Service Culturally and Linguistically Diverse Disability Housing and Accommodation Support Initiative Department of Disability, Housing and Community Services Department of Corrective Services Home and Community Care Housing and Accommodation Support Initiative High Needs Pool Integrated Services Project Lifetime Care and Support Authority Motor vehicle accident Non Government Organisation New South Wales New Zealand PricewaterhouseCoopers Research priority topic Survey of Disability, Ageing and Carers Statewide Spinal Cord Injury Service Transport Accident Commission Traumatic Brain Injury

Final Report PricewaterhouseCoopers iii

ADHC Acquired Brain Injury Research Project

Table of contents

Executive summary 8

1. Background 10

2. Profile of ABI in NSW 19

3. Service pathways, issues and practice 40

4. Meeting the needs of people with an ABI 71

Concluding comments 76

Appendix A Research priority topics & questions 77

Appendix B Quantitative data analysis methodology 80

Appendix C Detailed analysis of data sources 83

Appendix D Participant cover letter and consent form 101

Appendix E Workshop stakeholder list 103

Appendix F Endnotes 104

Final Report PricewaterhouseCoopers iv

ADHC Acquired Brain Injury Research Project

List of Tables

Table 1: Types of difficulties experienced by people with an ABI.......................................................10

Table 2: Further information sources considered ...............................................................................13

Table 3: Telephone interview sample characteristics .........................................................................17

Table 4: Research Priority Topics mapped to the key sections of the report .....................................18

Table 5: Summary of findings by data sourceconsidering persons aged 16 65 at the time of injury ...............................................................................................................................................19

Table 6: Summary of TBI Incidence Data Estimates aged 16 65 at the time of injury ..................20

Table 7: Age Distribution by Components Incidence of Traumatic Brain Injury in NSW .................21

Table 8: Expected Age Distribution based on Multiple Data Sources Incidence of Traumatic Brain

Injury in NSW .........................................................................................................................22

Table 9: Summary of non-TBI Incidence Data Estimates aged 16 65 at the time of injury ...........22

Table 10: Expected Age Distribution of Incidence of Non-Traumatic Brain Injury in NSW ................22

Table 11: Summary of Stroke related ABI Incidence Estimates aged 16 65 at the time of injury .23

Table 12: Expected Age Distribution of Incidence of Stroke related ABI in NSW ..............................23

Table 13: Summary of Prevalence Estimates of ABI (excluding Stroke) in NSW aged 16 65 at the

time of injury...........................................................................................................................23

Table 14: Age Distribution Breakdown of Prevalence Estimates of ABI in NSW ...............................24

Table 15: Summary of Prevalence Estimates of Stroke related ABI in NSW aged 16 65 at the

time of injury...........................................................................................................................24

Table 16: Age Distribution Breakdown of Prevalence Estimates of Stroke Related ABI in NSW ......25

Table 17: Level of Care required for person with a disability..............................................................25

Table 18: Estimated Yearly Incidence by Cause of TBI .....................................................................26

Table 19: Summary of Severity Estimates for ABI in NSW aged 16 65 at the time of injury.........27

Table 20: Summary of Severity Estimates for Stroke related ABI in NSW aged 16 65 at the time

of injury ..................................................................................................................................27

Table 21: Estimated Disability Services to people with ABI 2007/08 .................................................29

Table 22: Estimated Disability Services to people Classified with a Physical Disability in 2007/08...29

Table 23: NDA Number of Persons receiving Services 2008/09 Scaled up to allow for under reporting.................................................................................................................................30

Table 24: Clients on the Attendant Care Program as at 28 July 2010 ...............................................31

Table 25: HACC Clients on the High Needs Pool Program as at 28 July 2010 ..............................31

Table 26: Indigenous Status BIRD Data 2008 Calendar Year .....................................................33

Table 27: Percentage of Intake of Indigenous Status by broad type and year - AROC data .............33

Final Report PricewaterhouseCoopers v

ADHC Acquired Brain Injury Research Project

Table 28: Estimated % of CALD persons with ABI or Stroke in NSW SDAC 2003.........................34

Table 29: Unresolved sequelae reported by inmates who have suffered a head injury.....................35

Table 30: ABI Data Extracted from the Statewide Disability Services Database ...............................36

Table 31: Yearly Incidence of ABI eligible for LTCSA .....................................................................36

Table 32: 10 Year Prevalence Projections eligible for LTCSA ........................................................37

Table 33 Broad Injury Cause Groups Compensation Schemes in NSW........................................37

Table 34: Estimates of Compensable Clients with ABI Yearly Incidence Rate ...............................38

Table 35: Summary of Severity Estimates for ABI (non-stroke) in NSW aged 16-65 at the time of injury ......................................................................................................................................71

Table 36: Estimated disability services to people with ABI.................................................................72

Table 37: Estimated unmet need for people with ABI (non-stroke) ....................................................72

Table 38: Severity distribution - stroke related ABI - SDAC aged 16-65 at the time of injury .........73

Table 39: Number of persons hospitalised in initial care period, by clinical condition category, NSW, by calendar years, aged 15-64 ..........................................