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Brain Injury Association NSW
(BIA NSW)
Presentation
Rachel Merton – CEO
Bev Taylor – Training and
Development Manager
ABI and Homelessness
April 2013
Outline
 BIA NSW
 What is Acquired Brain Injury (ABI)
 A few statistics
 Living life after an ABI
 How can BIA NSW assist you?
 Questions
Who is BIA NSW?
The Brain Injury Association of NSW (BIA NSW)
 the peak body in NSW for people affected by
acquired brain injury (ABI)
 advocacy and support
 information and resources
What do we do?
 Support for people with an ABI, their families and
carers:
 Information and referral service (1800 number)
 Individual advocacy service
 Brokerage packages
 CarerLink mentoring program
 Systemic advocacy
 Representation to government and policy makers
 Submissions
 Media advocacy
What do we do?
 Building knowledge and networks
 Training (general and tailored)
 Facilitating networks – interagency and partnerships
 Raising awareness of ABI:
 Speakers Bureau: supporting people with ABI to share
their story – for education and awareness-raising
 Using the media
 Newsletters, fact-sheets, presentations
What do we do?
We shine the spotlight on ABI to
make visible the invisible disability!
 BIA NSW
 What is Acquired Brain Injury (ABI)
 A few statistics
 Living life after an ABI
 How can BIA NSW assist you?
 Discussion
Definition of ABI
 An injury to the brain after birth.
 The effects may be either temporary or
permanent.
 May cause partial or total disability.
 ABI can happen to anybody at any time
Types of Acquired Brain Injury
 Traumatic Brain Injury (TBI)
 Non-traumatic Brain Injury
What is TBI?
 TBI (Traumatic Brain Injury) is one type of ABI
 TBI is caused by violent physical force to the head (eg:
MVA’s, assaults, falls, sporting accidents or
acceleration forces alone (eg: MVA)
 TBI may cause the brain to bleed, tear, be
penetrated, stretched, bruised or become swollen
 TBI can result in complete recovery, permanent
disability or death
How does ABI happen?
Acquired
Brain
Injury
Trauma
Brain
Tumour
Toxins
Hypoxia
Degen.
Diseases
Infection
Stroke
MVA
Falls
Assaults
Sport
Pedestrians
Growths
(malignant
& benign)
Surgery to
remove
Alcohol
Drugs
Chemicals
Medication
Petrol
Heart Attack
Drowning
Suffocation
Suicide
Childbirth
Medical
Ischaemic
blocked-artery
Haemorrhagic
(bleed in the
brain)
Dementia
Alzheimer’s
Parkinson’s
Encephalitis
Meningitis
Dental abscess
Cold sores
/herpes
 BIA NSW
 What is Acquired Brain Injury (ABI)
 A few statistics
 Living life after an ABI
 How can BIA NSW assist you?
 Discussion/brainstorm
 BIA NSW
 What is Acquired Brain Injury (ABI)
 A few statistics
 Living life after an ABI
 How can BIA NSW assist you?
 Discussion/brainstorm
Prevalence:
How many people have an ABI?
 1 in 45 Australians (432,700 people) have ABI with
activity limitations or participation restrictions due to
disability.
 Almost three-quarters of these people are under 65 years
 About 20,000 are under 15 years
 Now: there are more survivors from MVAs – many are
living with severe injuries and limited access to support
Source: ABS Survey of Disability, Ageing and Carers 2003
Incidence:
No. of TBIs per year
Source: AIHW 2007 Bulletin 55
21,800 hospital stays
69% males
Peaks: Males 15-24 years (MVAs, sport accidents); Both sexes: >75 years (falls)
Hospitalisations for TBI, Australia, 2004-05
Disadvantaged Communities
Rates of ABI are higher in socially disadvantaged populations:
 ATSI:
– prevalence estimates are three times that of non-ATSI
communities,
– One study found head injury due to assault among ATSI
communities was 21 times higher than for non-ATSI
Australians (854/100,000 cf 40.7/100,000 for the non-ATSI
population)
 People in the criminal justice system
– Higher prevalence and incidence than general population
– Estimated 60% of prisoners have ABI with one study
showing up to 80%
Sources: Jamieson et al, 2008; Schofield et al, 2006; Brain Injury Australia (July 2011) Out of
sight, out of mind: People with an acquired brain injury and the criminal justice system
Involvement with police
People with an ABI have:
 a higher number of contacts with police than people without
an ABI
 a higher proportion of convictions for minor offences than
offenders without an ABI (Dowse et al). 40% of convictions in
Dowse’s cohort were for ‘theft and related offences’ or ‘road
traffic and motor vehicle regulatory offences’. A further 12%
were for public order offences.
Sources:
Dowse L et al (April 2011) People with mental health disorders and cognitive disabilities in the
criminal justice system: Impact of acquired brain injury (a study of 604 people within the CJS
identified as having an ABI)
Brain Injury Australia (July 2011) Out of sight, out of mind: People with an acquired brain injury and
the criminal justice system
 BIA NSW
 What is Acquired Brain Injury (ABI)
 A few statistics
 Living life after an ABI
 How can BIA NSW assist you?
 Discussion/brainstorm
 The location of the brain damage
 The severity of the injury
 The length of time since injury
 The extent a person has been able to integrate back
into the community
 Access to rehabilitation
 The extent a person retains important/personal
relationships and friendships
The effects of ABI
can be complicated by:
Changes after ABI
 Physical problems
 Sensory problems
 Cognitive (thinking) problems
 Emotional problems
 Problems with social interaction
 Communication problems
 Overwhelming grief/sense of loss
 Before/Now comparisons
 Severe impact on families and friends
May lead to ...
 Changes to important relationships - people commonly
lose key relationships and have trouble making new ones
 Social isolation, exploitation, neglect - access to services
and support is unfair and inequitable
 Loss of employment, financial hardship, homelessness
 Loss of value status and respect in the community
 Mental health issues
 Drug and alcohol dependency
 Involvement with Criminal Justice System
 Need for long-term support
Some challenges to services
 Lack of motivation
 Memory problems (eg not attending appointments;
retaining information)
 Behaviours of concern
 Communication difficulties
 Lack of natural / social supports
 High rate of comorbidity with other problems
 Mild ABI – significant for person but may not meet
eligibility criteria
Practical Techniques
 Emotional support
– Speak clearly, calmly, reassuringly, in an adult voice
– Avoid arguments and confrontations
– Use non-verbal expressions
 Memory Aids
– Help clients with memory / reminder techniques
– Write important things down
– Use repetition
– Use visual aids
Practical Techniques - cont’d
 Reduce confusion
– Allow processing time
– Reduce background noise and distractions
– Keep concepts and instructions clear and concise
– Realistic goal setting
– Ask the person to repeat back to you what they understand
 Respect
– Treat people with cognitive disabilities as adults
– Adjust communication to match person’s understanding
ABI: ‘The Hidden Disability’
 Causes problems with a person’s basic ability to
think and make decisions
 Not as easy to distinguish as other physical
disabilities
 People with a brain injury may be
misunderstood, ignored and ‘judged’ by others
(common labels: lazy, non-
compliant, argumentative, ‘difficult’)
 BIA NSW
 What is Acquired Brain Injury (ABI)
 How is ABI different from …
 A few statistics
 Living life after an ABI
 How can BIA NSW assist you?
Brainstorm?
How can BIA NSW help you?
 Information and Referral service
 Training and professional development; mentoring
 Resources and handouts
 Brokerage
 Online information
 Membership and newsletters
– For you
– For people you work with
 Programs for people with an ABI and their families
 Interagencies, networking
 Other
BIA NSW
Phone: (02) 9868 5261
Toll free: 1800 820 840
www.biansw.org.au
You can also find us on Facebook!
Remember to ‘Bang on a Beanie’ during
Brain Injury Awareness Week
12th to 20th August 2013

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Bia NSW Acquired brain Injury and homelessness presentation 2013

  • 1. Brain Injury Association NSW (BIA NSW) Presentation Rachel Merton – CEO Bev Taylor – Training and Development Manager ABI and Homelessness April 2013
  • 2. Outline  BIA NSW  What is Acquired Brain Injury (ABI)  A few statistics  Living life after an ABI  How can BIA NSW assist you?  Questions
  • 3. Who is BIA NSW? The Brain Injury Association of NSW (BIA NSW)  the peak body in NSW for people affected by acquired brain injury (ABI)  advocacy and support  information and resources
  • 4. What do we do?  Support for people with an ABI, their families and carers:  Information and referral service (1800 number)  Individual advocacy service  Brokerage packages  CarerLink mentoring program  Systemic advocacy  Representation to government and policy makers  Submissions  Media advocacy
  • 5. What do we do?  Building knowledge and networks  Training (general and tailored)  Facilitating networks – interagency and partnerships  Raising awareness of ABI:  Speakers Bureau: supporting people with ABI to share their story – for education and awareness-raising  Using the media  Newsletters, fact-sheets, presentations
  • 6. What do we do? We shine the spotlight on ABI to make visible the invisible disability!
  • 7.  BIA NSW  What is Acquired Brain Injury (ABI)  A few statistics  Living life after an ABI  How can BIA NSW assist you?  Discussion
  • 8. Definition of ABI  An injury to the brain after birth.  The effects may be either temporary or permanent.  May cause partial or total disability.  ABI can happen to anybody at any time
  • 9. Types of Acquired Brain Injury  Traumatic Brain Injury (TBI)  Non-traumatic Brain Injury
  • 10. What is TBI?  TBI (Traumatic Brain Injury) is one type of ABI  TBI is caused by violent physical force to the head (eg: MVA’s, assaults, falls, sporting accidents or acceleration forces alone (eg: MVA)  TBI may cause the brain to bleed, tear, be penetrated, stretched, bruised or become swollen  TBI can result in complete recovery, permanent disability or death
  • 11. How does ABI happen? Acquired Brain Injury Trauma Brain Tumour Toxins Hypoxia Degen. Diseases Infection Stroke MVA Falls Assaults Sport Pedestrians Growths (malignant & benign) Surgery to remove Alcohol Drugs Chemicals Medication Petrol Heart Attack Drowning Suffocation Suicide Childbirth Medical Ischaemic blocked-artery Haemorrhagic (bleed in the brain) Dementia Alzheimer’s Parkinson’s Encephalitis Meningitis Dental abscess Cold sores /herpes
  • 12.  BIA NSW  What is Acquired Brain Injury (ABI)  A few statistics  Living life after an ABI  How can BIA NSW assist you?  Discussion/brainstorm
  • 13.  BIA NSW  What is Acquired Brain Injury (ABI)  A few statistics  Living life after an ABI  How can BIA NSW assist you?  Discussion/brainstorm
  • 14. Prevalence: How many people have an ABI?  1 in 45 Australians (432,700 people) have ABI with activity limitations or participation restrictions due to disability.  Almost three-quarters of these people are under 65 years  About 20,000 are under 15 years  Now: there are more survivors from MVAs – many are living with severe injuries and limited access to support Source: ABS Survey of Disability, Ageing and Carers 2003
  • 15. Incidence: No. of TBIs per year Source: AIHW 2007 Bulletin 55 21,800 hospital stays 69% males Peaks: Males 15-24 years (MVAs, sport accidents); Both sexes: >75 years (falls) Hospitalisations for TBI, Australia, 2004-05
  • 16. Disadvantaged Communities Rates of ABI are higher in socially disadvantaged populations:  ATSI: – prevalence estimates are three times that of non-ATSI communities, – One study found head injury due to assault among ATSI communities was 21 times higher than for non-ATSI Australians (854/100,000 cf 40.7/100,000 for the non-ATSI population)  People in the criminal justice system – Higher prevalence and incidence than general population – Estimated 60% of prisoners have ABI with one study showing up to 80% Sources: Jamieson et al, 2008; Schofield et al, 2006; Brain Injury Australia (July 2011) Out of sight, out of mind: People with an acquired brain injury and the criminal justice system
  • 17. Involvement with police People with an ABI have:  a higher number of contacts with police than people without an ABI  a higher proportion of convictions for minor offences than offenders without an ABI (Dowse et al). 40% of convictions in Dowse’s cohort were for ‘theft and related offences’ or ‘road traffic and motor vehicle regulatory offences’. A further 12% were for public order offences. Sources: Dowse L et al (April 2011) People with mental health disorders and cognitive disabilities in the criminal justice system: Impact of acquired brain injury (a study of 604 people within the CJS identified as having an ABI) Brain Injury Australia (July 2011) Out of sight, out of mind: People with an acquired brain injury and the criminal justice system
  • 18.  BIA NSW  What is Acquired Brain Injury (ABI)  A few statistics  Living life after an ABI  How can BIA NSW assist you?  Discussion/brainstorm
  • 19.  The location of the brain damage  The severity of the injury  The length of time since injury  The extent a person has been able to integrate back into the community  Access to rehabilitation  The extent a person retains important/personal relationships and friendships The effects of ABI can be complicated by:
  • 20. Changes after ABI  Physical problems  Sensory problems  Cognitive (thinking) problems  Emotional problems  Problems with social interaction  Communication problems  Overwhelming grief/sense of loss  Before/Now comparisons  Severe impact on families and friends
  • 21. May lead to ...  Changes to important relationships - people commonly lose key relationships and have trouble making new ones  Social isolation, exploitation, neglect - access to services and support is unfair and inequitable  Loss of employment, financial hardship, homelessness  Loss of value status and respect in the community  Mental health issues  Drug and alcohol dependency  Involvement with Criminal Justice System  Need for long-term support
  • 22. Some challenges to services  Lack of motivation  Memory problems (eg not attending appointments; retaining information)  Behaviours of concern  Communication difficulties  Lack of natural / social supports  High rate of comorbidity with other problems  Mild ABI – significant for person but may not meet eligibility criteria
  • 23. Practical Techniques  Emotional support – Speak clearly, calmly, reassuringly, in an adult voice – Avoid arguments and confrontations – Use non-verbal expressions  Memory Aids – Help clients with memory / reminder techniques – Write important things down – Use repetition – Use visual aids
  • 24. Practical Techniques - cont’d  Reduce confusion – Allow processing time – Reduce background noise and distractions – Keep concepts and instructions clear and concise – Realistic goal setting – Ask the person to repeat back to you what they understand  Respect – Treat people with cognitive disabilities as adults – Adjust communication to match person’s understanding
  • 25. ABI: ‘The Hidden Disability’  Causes problems with a person’s basic ability to think and make decisions  Not as easy to distinguish as other physical disabilities  People with a brain injury may be misunderstood, ignored and ‘judged’ by others (common labels: lazy, non- compliant, argumentative, ‘difficult’)
  • 26.  BIA NSW  What is Acquired Brain Injury (ABI)  How is ABI different from …  A few statistics  Living life after an ABI  How can BIA NSW assist you?
  • 28. How can BIA NSW help you?  Information and Referral service  Training and professional development; mentoring  Resources and handouts  Brokerage  Online information  Membership and newsletters – For you – For people you work with  Programs for people with an ABI and their families  Interagencies, networking  Other
  • 29. BIA NSW Phone: (02) 9868 5261 Toll free: 1800 820 840 www.biansw.org.au You can also find us on Facebook! Remember to ‘Bang on a Beanie’ during Brain Injury Awareness Week 12th to 20th August 2013

Notas do Editor

  1. A TBI is one type of acquired brain injury and occurs when an external force traumatically injures the brain. Injury can be caused by a direct impact to the head (fall, assault, road trauma, surgery) or by acceleration alone – eg: acceleration and deceleration from high speed MVAs.  As our brain sits in a gel like fluid called cerebro-spinal fluid, encased in a sac of dura mater, the ‘violent force to the head’ or acceleration forces, can cause the brain, which has the consistency of chocolate pudding, to bounce around inside the hard skull hitting the walls of the skull and possibly sheering across the sharp, boney ridges at the base and front of the skull. Depending on the forces involved and/or the nature of direct impact, the brain may bleed, tear, be penetrated, stretched, bruised and swollen. The brain may also rotate on the brain stem. Millions of neurons that communicate with each other and make up ‘who we are’, may be displaced and damaged, possibly affecting one or more areas of the brain.
  2. There is considerable uncertainty about the incidence and prevalence of ABI in Australia.The only measure we have available to measure prevalence of ABI is self-report. Based on the results of the 2003 ABS Survey of Disability, 1 in 45 Australians (432,700 people) have an ABI that limits or restricts their activity and social participation. Almost three-quarters of these people are under 65 years, and about 20,000 are under 15 years
  3. Incidence of ABI is also impossible to measure accurately with current data collection practices, and the best proxy measure is to use hospital statistics – which we can do to a reasonable degree for Traumatic Brain Injury. This chart relates to hospital stays relating to TBI. In 2004–05 there were almost 21,800 hospital stays across Australia involving a diagnosis of TBI.Of these hospital stays:• males accounted for 69%, and in all age-groups, males were more likely to be hospitalised thanFemales • there was a strong peak in hospitalisation rates for males between the ages of 15 and24, and for both sexes beyond the age of 75 yearsFor non-traumatic brain injury, hospital stats are not reliable, as the diagnoses are not captured in a routine way due to the various ways of acquiring the injury. In many cases ABI is not diagnosed, so it is not recorded. Estimates place the incidence of non traumatic brain injury as at least 20,000 per year.We do know that about 48,000 people have a stroke in Australia each year, and about three quarters of strokes occur in people over 65 years. Due to the high proportion of non traumatic brain injury that is caused by stroke, we can say that the rate of non traumatic ABI increases with age, so if this chart were to reflect incidence of all ABI, it would have a very different shape (low in the younger years to a high in the 65+ years).
  4. ABI rates are significantly higher in socially disadvantaged populations.These prevalence rates really are estimates. There has been very little research into the prevalence of ABI amongst ATSI populations. In addition, while data collection on ATSI disability has continued to improve, questions remain as to whether disability surveys are culturally relevant. ATSI communities may have a concept of disability that is dramatically different from non-ATSI communities, so a lot more work needs to be done in this area.However, the estimates we do have indicate rates of ABI up to three times that of non-ATSI communities. One study has shown that the rate of head injury due to assault among ATSI communities was 21 times higher than the equivalent rate for non-ATSI Australians (854 per 100,000 compared to 40.7 per 100,000 for the non-ATSI population)People with an ABI are also over-represented in the criminal justice system, with prevalence estimates ranging from 35% to one study finding that 82% of NSW prisoners reported having an ABI.
  5. ABI rates are significantly higher in socially disadvantaged populations.These prevalence rates really are estimates. There has been very little research into the prevalence of ABI amongst ATSI populations. In addition, while data collection on ATSI disability has continued to improve, questions remain as to whether disability surveys are culturally relevant. ATSI communities may have a concept of disability that is dramatically different from non-ATSI communities, so a lot more work needs to be done in this area.However, the estimates we do have indicate rates of ABI up to three times that of non-ATSI communities. One study has shown that the rate of head injury due to assault among ATSI communities was 21 times higher than the equivalent rate for non-ATSI Australians (854 per 100,000 compared to 40.7 per 100,000 for the non-ATSI population)People with an ABI are also over-represented in the criminal justice system, with prevalence estimates ranging from 35% to one study finding that 82% of NSW prisoners reported having an ABI.