Assessment of acquired brain injury in Aboriginal and Torres Strait Islander Australians: Guidance for DisabilityCare Australia INDIA BOHANNA, ANNE STEPHENS, RACHAEL WARGENT, JULIETTE CATHERALL, CAROLYN TIMMS, DEBORAH GRAHAM AND ALAN CLOUGH James Cook University, The Cairns Institute, Cairns 2013 ISBN: 978-0-9875922-0-0 Copyright Statement This report is licensed under a Creative Commons Attribution 2.5 Australia licence. You are free to copy, communicate and adapt this work, so long as you attribute James Cook University and the authors. For more information see http://creativecommons.org/licenses/by/2.5/au Acknowledgements We would like to acknowledge the important contributions of Ms Jennifer Cullen and Ms Donna Engels (Synapse), and Dr Derek Brookes (Brain Injury Australia). Their assistance with the research, engagement, as well as the interpretation and revisions to the report significantly contributed to the positive outcomes of the project. We would also like to acknowledge Ms Katrina Bird and Ms Katrina Keith for their editorial support. We acknowledge the First People’s Disability Network and Aboriginal Disability Network of NSW. We thank the members of our expert reference group and everyone who has contributed their time to the consultations and especially those with acquired brain injury and their families who shared their stories with us. Artwork kindly provided by David Dahwurr Hudson, Didgeralia, www.davidhudson.com.au Assessment of ABI in Aboriginal and Torres Strait Islander Australians 9 July 2013 Page 2 of 123 Assessment of ABI in Aboriginal and Torres Strait Islander Australians 9 July 2013 Page 3 of 123 List of abbreviations ABI Acquired Brain Injury FaHCSIA Department of Families, House, Community Services and Aboriginal and Torres Strait Islander Affairs ICF International Classification of Functioning, Disability and Health JCU James Cook University LAC Local Area Coordinators NDIS National Disability Insurance Scheme SP Service Providers WHO World Health Organization Glossary of terms Acquired Brain Injury Any damage to the brain that occurs after birth Assessment An evaluation or estimation of an individual’s eligibility, function, impairments or needs Carer An individual who: (a) provides personal care, support and assistance to another individual who needs it because that other individual is a person with disability; and (b) does not provide the care, support and assistance: (i) under a contract of service or a contract for the provision of services; or (ii) in the course of doing voluntary work for a charitable, welfare or community organisation; or (iii) as part of the requirements of a course of education or training. Cultural Acceptability Something that has been deemed acceptable by Aboriginal and/or Torres Strait Islander Australians because it reflects the ideas, experiences and needs of their culture Cultural Awareness Acknowledging, accepting and appreciating the concepts, knowledge and experiences that are unique to Aboriginal and Torres Strait Islander Australian culture Cultural Competence The ability to interact effectively with Aboriginal and Torres Strait Islander Australians Informant An individual who provides information regarding a participant or prospective participant Instrument A pencil and paper or computer-based measure for determining a participant or prospective participant’s eligibility, impairments or needs Participant A person who has been deemed eligible to participate in DisabilityCare Australia Planners/Local Area Individuals employed by DisabilityCare Australia to conduct assessments Coordinators Practitioners A broad range of health professionals, DisabilityCare staff, Local Area Coordinators and social workers Prospective Participant A person in relation to whom an access request has been made but not yet decided Assessment of ABI in Aboriginal and Torres Strait Islander Australians 9 July 2013 Page 4 of 123 Protocol Guidelines for behavior to be observed when working with Aboriginal and Torres Strait Islander individuals, to ensure effective and respectful engagement and assessment. Service Providers A broad range of agencies, normally from the health, aged or disabilities sectors, situated in communities Assessment of ABI in Aboriginal and Torres Strait Islander Australians 9 July 2013 Page 5 of 123 Contents List of abbreviations ................................................................................................................................ 1 Glossary of terms .................................................................................................................................... 4 Table of Tables ........................................................................................................................................ 8 Table of Figures ....................................................................................................................................... 8 Executive Summary ................................................................................................................................. 9 Chapter 1: Introduction & Background & Method ............................................................................... 11 Acquired Brain Injury ........................................................................................................................ 12 Policy settings ................................................................................................................................... 14 Aboriginal and Torres Strait Islander Australians and Acquired Brain Injury ............................... 15 Systemic non-supports.................................................................................................................. 16 Concepts of health and disability .................................................................................................. 18 Lack of Instruments ....................................................................................................................... 19 Racism and Discrimination ............................................................................................................ 19 Remote communities .................................................................................................................... 19 Methodology ..................................................................................................................................... 20 Procedure ...................................................................................................................................... 20 Chapter 2: Engagement, Planning and Assessment Framework for Aboriginal and Torres Strait Islander People ..................................................................................................................................... 25 General principles of working with Aboriginal and Torres Strait Islander people affected by ABI ...................................................................................................................................................... 28 Tools and techniques for critical reflection .................................................................................. 35 The context of assessment in Aboriginal and Torres Strait Islander communities ...................... 36 Strengths versus deficit-based approach ...................................................................................... 37 Key stakeholders ........................................................................................................................... 37 Referral into DisabilityCare ........................................................................................................... 40 Stages of Assessment ........................................................................................................................ 43 Stage one: Engagement with Participants’ community ............................................................... 43 Stage two: Pre-assessment .......................................................................................................... 47 Stage three: Assessment for support ............................................................................................ 50 Stage four: Post-assessment follow-up ........................................................................................ 57 Chapter 3: Development of a culturally acceptable instrument toolkit for assessing functioning cognitive impairment and the care and support needs of Aboriginal persons with ABI. ..................... 60 Assessment and DisabilityCare ......................................................................................................... 61 Cross-cultural assessment................................................................................................................. 61 Assessment of ABI in Aboriginal and Torres Strait Islander Australians 9 July 2013 Page 6 of 123 The instrument toolkit ...................................................................................................................... 62 Aim 1. Collate instruments currently used for assessing function and participation in ABI ........ 64 Aim 2. Develop an evaluation framework identifying characteristics of instruments that enable culturally acceptable and effective assessment ........................................................................... 65 Aim 3. Evaluate the cultural acceptability of instruments currently used for assessing function and participation in ABI ................................................................................................................ 73 Aim 4. Development of culturally acceptable instrument toolkit for assessment of function and participation in Aboriginal Australians with an ABI ...................................................................... 74 Summary and recommendations...................................................................................................... 90 Chapter 4: A framework for DisabilityCare Australia assessor training and organisational capacity building ................................................................................................................................................. 92 4.1. ABI training ................................................................................................................................. 93 4.1A: Knowledge of ABI: causes, symptoms and signs ................................................................ 93 4.1B: Training in the assessment of ABI ....................................................................................... 93 4.2 Aboriginal and Torres Strait cultural training: ............................................................................ 94 4.2A: Cultural awareness training ................................................................................................ 94 4.2B: Cultural Competence skills-based monitoring and assessment ......................................... 94 Cultural respect ............................................................................................................................. 96 Cultural safety ............................................................................................................................... 97 Chapter 5: Summary, conclusion and general recommendations ..................................................... 107 Assessment and planning framework ............................................................................................. 107 Instrument toolkit ........................................................................................................................... 108 Assessor training and capacity building framework ....................................................................... 108 General recommendations ............................................................................................................. 108 References .......................................................................................................................................... 110 Appendix 1. Instruments assessing cognitive function ....................................................................... 115 Appendix 2. Instruments assessing functioning care and support needs .......................................... 117 Appendix 3. Evaluation of cognitive instruments ............................................................................... 120 Appendix 4. Evaluation of the functional and care and support needs instruments ......................... 122 Assessment of ABI in Aboriginal and Torres Strait Islander Australians 9 July 2013 Page 7 of 123 Table of Tables Table 1.1: Participants interviewed for this study ................................................................................ 23 Table 3.1: Stages of instrument toolkit development .......................................................................... 63 Table 3.2: Questionnaire items, ICF domains, and culturally acceptable domain definitions ............. 83 Table 4.1: ABI training programs .......................................................................................................... 98 Table 4.2: Cultural competence training programs (National)) .......................................................... 100 Table 4.3: Other relevant training or professional development packages that might be useful (e.g. TAFE courses, Aboriginal and Torres Strait Islander mentoring programs)........................................ 105 Table of Figures Figure 1.1: Key Functions Impaired by an Acquired Brain Injury .......................................................... 13 Figure 1.2: Phases of the study and the cycle of Continuous Quality Improvement ........................... 21 Figure 1.3: Map of communities consulted .......................................................................................... 23 Figure 2.1: Planning and Assessment Framework ................................................................................ 27 Figure 2.2: Principles for culturally appropriate engagement .............................................................. 31 Figure 2.3: Guidelines for reflective practice. Adapted from (Walker et al., 2000, p. 319) and (Walker & Sonn, 2010, pp. 168 - 170) ................................................................................................................ 36 Figure 2.4: Key Stakeholders ................................................................................................................. 38 Figure 2.5: No wrong door .................................................................................................................... 41 Figure 2.6: Engagement with Participants community ......................................................................... 43 Figure 2.7: Typical services, organisations and facilities available in remote ...................................... 45 Figure 2.8: Do's and Don'ts for DisabilityCare Planners and LACs ........................................................ 46 Figure 2.9: Pre-assessment ................................................................................................................... 47 Figure 2.10: Stage 2 Key Do’s and Don’ts for DisabilityCare Planners and LACs .................................. 50 Figure 2.11: Stage 3: Assessment for support ...................................................................................... 51 Figure 2.12: Stage 3 Key Do's and Don'ts for DisabilityCare Planners and LAC’s ................................. 52 Figure 2.13: Assessment for eligibility for support ............................................................................... 53 Figure 2.14: Stage 3: Key Do’s and Don’ts for DisabilityCare Planners and LACs ................................ 56 Figure 2.15: Stage 4 Post assessment follow-up ................................................................................... 57 Figure 2.16: Stage 4: Key Dos and Don'ts for DisabilityCare Planners and LAC’s ................................. 59 Figure 3.1: Key areas of function impaired by brain injury ................................................................... 67 Figure 3.2: Example of items and response scale from the function, activity and participation instrument ............................................................................................................................................ 90 Assessment of ABI in Aboriginal and Torres Strait Islander Australians 9 July 2013 Page 8 of 123 Executive Summary In 2012, James Cook University, Synapse (Brain Injury Association of Queensland, Inc.) and Brain Injury Australia were funded by the Federal Government’s Practical Design Fund (Department of Families, Housing, Community Services and Aboriginal and Torres Strait Islander Affairs) to prepare individuals, communities and services for the transition to DisabilityCare Australia. The project had three deliverables: 1. Develop best practice guidelines for engagement and assessment of Aboriginal and Torres Strait Islander persons with acquired brain injury and their communities. 2. Develop, pilot and evaluate a culturally appropriate instrument for assessing functioning, cognitive impairment, and the care and support needs of Aboriginal and Torres Strait Islander persons with acquired brain injury. 3. Develop a support framework for assessors including guidelines for training, peer mentoring, supervision, management and review. Between February and May, 2013, a variety of stakeholders and communities with a vested interest in the assessment and support of Aboriginal and Torres Strait islander people with an acquired brain injury were consulted, across the Northern Territory, Queensland and New South Wales. The key findings of this research can be summarised as: • Careful consideration of guidelines for the appropriate protocols for engaging Aboriginal and Torres Strait Islander Australians in the assessment process was undertaken. In consultation with stakeholders, a four-stage Planning and Assessment framework was developed that describes the appropriate actions that DisabilityCare Australia Planners and/or Local Area Coordinators need to take during the assessment process when determining eligibility to DisabilityCare Australia. • A variety of existing instruments were identified and reviewed for their cultural acceptability and usefulness for use with Aboriginal and Torres Strait Islander Australians. A novel instrument toolkit was developed, containing cognitive and functional assessments that are culturally acceptable for assessment of acquired brain injury in Aboriginal and Torres Strait Islander Australians. This instrument toolkit must be scientifically validated before DisabilityCare Planners and Local Area Co-ordinators can use it. • The necessary training components for the professional development of DisabilityCare staff were identified. Both cultural awareness and competency training and acquired brain injury training programmes and coursework are detailed in this report. Assessment of ABI in Aboriginal and Torres Strait Islander Australians 9 July 2013 Page 9 of 123 Recommendations pertaining to the delivery of culturally competent and acceptable assessment are as follows: 1. DisabilityCare should integrate the Planning and Assessment Framework into its Operational Guidelines. 2. When conducting assessments with Aboriginal and Torres Strait Islander prospective participants, assessors should work in accordance with the four stages specified in the Planning and Assessment Framework: Engagement, Pre-Assessment, Assessment and Follow-up. 3. Training for assessors should be developed to ensure the Planning and Assessment Framework is reflected in practice. 4. DisabilityCare should remain committed to using valid assessment instruments. The culturally acceptable instrument toolkit described should be validated to enable culturally acceptable and accurate assessment of Aboriginal and Torres Strait Islander Australians with acquired brain injury. 5. The alignment of the instruments with the DisabilityCare Assessment Toolkit must be reviewed when the DisabilityCare Assessment Toolkit becomes available. 6. Accredited training for assessors should be developed to ensure instruments are used appropriately. 7. DisabilityCare should ensure that all staff engage in training and ongoing formally accredited professional development in the area of cultural competence and awareness. 8. Accredited training must be developed to address the lack of training available. Training must cover causes and impacts of acquired brain injury, and assessment and engagement protocols. 9. DisabilityCare should remain committed to employing or contracting Aboriginal and Torres Strait Islander Australian staff to undertake assessment of Aboriginal and Torres Strait Islander clients with acquired brain injury. 10. An Aboriginal and Torres Strait Islander review committee should be established, to hear appeals from Aboriginal and Torres Strait Islander prospective participants whose assessment for eligibility was unsuccessful. This is extremely important during the interim period in which no validated assessment instruments or approaches exist. 11. Awareness of acquired brain injury must be raised in DisabilityCare staff and Aboriginal and Torres Strait Island communities, to ensure that Aboriginal and Torres Strait Islander individuals with this disability are recognised and have access to DisabilityCare support. 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