1. Banksia Hill FASD and neurodevelopmental Impairments project
Australasian Youth Justice Conference 2016
Noni Walker

2. THANKS TO Young people at Banksia Hill and their Families
Banksia Hill Detention Centre staff
Department of Corrective Services
Department for Child Protection and Family Support
This presentation cannot be considered as either endorsed by the Department of Corrective Services or an expression of the policies or view of the Department of Corrective Services
Any errors of omission or commission are the responsibility of the Researchers
Project funded by NHMRC

3. Aims of Alcohol and Pregnancy and FASD Research Program:
Reduce alcohol consumption in pregnancy
Improve clinical practice and diagnosis of FASD
Support appropriate therapies, management and services for children with FASD and their families
1. Prevention
Midwives’ survey
93% asked about alcohol; 99% advised no alcohol; 93% wanted professional development
3M FASD Prevention project
Marulu: prevention strategy in the Fitzroy Valley
Midwives: A workforce intervention up-skilling midwives in use of AUDIT-C and brief intervention
Mass Media: advertising campaign using
Evaluated general population TV ads
Aboriginal specific radio and TV ads
2. Diagnosis
Australian diagnostic instrument developed by Australian FASD Collaboration
FAS, PFAS, ND-AE
Feasibility trial – in field now
of instrument
of guidelines for use of instrument
of guidelines for support and referral for families
On-line training module – in development
National implementation and evaluation of instrument
3. Management
National Disability Insurance Agency – review of research evidence on interventions, services and supports for FASD
The Alert program® (NHMRC project grant)
Primary school-based RCT
for Aboriginal children in Fitzroy Valley
Children taught to change level of alertness
Improve self-regulation and executive functioning
Family, teacher and therapist support

4. Outline
What do we already know about FASD, neurodevelopmental impairment and youth justice?
What is the Banksia Hill project adding to the evidence base?
How is evidence from the Banksia Hill project making a difference to practice?

5. In Australia Women 18 – 44 years:
10% more than 2 standard drinks every day
45% more than 4 standard drinks on at least 1 occasion
How many drinks during pregnancy?
Of those who did consume alcohol after knowing they were pregnant, most (96%) reported usually consumed 1–2 standard drinks.
NDSHS 2013 (National Drug Strategy household Survey)
Why do women drink during pregnancy?
Lack of knowledge about the effects of alcohol on the fetus
Having a partner or friend who drinks
Remote residence
Low socioeconomic and educational status
Living in a community tolerant of heavy drinking
Unemployment

6. Advice on alcohol in pregnancy
No alcohol in pregnancy is the safest choice
National Health & Medical Research Council Guidelines on Alcohol Use

7. Alcohol and the placenta
Alcohol is a teratogen – it interrupts or alters the normal development of the fetus including the development of the brain and major organs
Other teratogens include:
rubella
radiation
mercury
thalidomide
Blood alcohol content –
Alcohol is metabolized at the rate of .015 of blood alcohol concentration (BAC) every hour.
A person with a very high BAC of .15 will have no measurable alcohol in the bloodstream after ten hours (.15 divided by .015 = 10)
Is there a safe time or amount to drink?
Timing
When during the development
Frequency
How often was there exposure
Quantity
How much at each exposure

8. Fetal Development

9. Facial Features
Majority of children and young people with a FASD will not have the facial features
Palpebral fissures (short eye openings)
Smooth philtrum (space between nose and upper lip)
Thin upper lip

10. FASD Brain

11. FASD Brain

12. FASD and other neuro-developmental impairments are “hidden disabilities”

13. FASD Primary Disabilities: Secondary Effects:
Memory and learning deficits
Attention problems
Deficits in abstract thinking (maths, money and time)
Difficulty processing, storing &
retrieving information
Inability to make decisions
Impulsivity, hyperactivity & distractibility
Slower auditory pace
Increased agitation, irritability and aggression
Inability to understand cause & effect (particularly when relating actions to consequences)
Difficulty understanding social expectations and personal space
Secondary Effects:
Trouble with the law
Trouble at school
Mental illness
Reduced self-esteem
Substance abuse
Unemployment
Homelessness
Lack of education
Inappropriate sexual behaviour
Often lead to
Person with FASD has slowed cognitive functioning (thinking pace) – may say I don’t know, appear to ‘shut down’ or need minutes to generate answer rather than seconds
Memory impairment means difficulty in learning from past mistakes and often the same mistakes are made over and over again despite increasingly severe consequences
Inconsistent memory or performance means remembering a task for 2 days and then forgetting the task on the 3rd day
Inconsistent performance contributes to labelling the person as belligerent, wilful or not trying
May only pick up pieces of information or instructions (slower auditory pace) – need to give 1 direction or instruction at a time
Ability to repeat rules/instructions but inability to put them into action/apply these rules
May talk excessively but unable to have meaningful exchange
Perseveration - Person with FASD may have problems switching thoughts, stopping activities or moving onto a new task and often reacts strongly to changes in setting, program or personal
Judgement, cause and effect reasoning requires abstraction
Common for person with FASD to experience difficulties in conceptualising time, understanding mathematical concepts and/or value of money
Inability to recognise danger or distinguish danger from safety, friend from stranger, fantasy from reality
Person with FASD may be overwhelmed by sensory input and unable to filter out extraneous stimuli
Increased agitation, irritability, and aggression
Some underact to pain, others tactile stimulation can be an issue

14. FASD and trauma
Children and young people with a FASD may have experienced
prenatal substance exposure
poor diet or malnutrition
multiple placements
neglectful, chaotic or abusive home environments
This can lead to trauma and/or attachment issues that have impact on children’s brains
A combination of trauma and FASD will significantly increase neurodevelopmental & neurobehavioural challenges than trauma alone
More intellectual, cognitive and behavioural challenges for children or young people with trauma and FASD
More intellectual and cognitive challenges for children/young people with trauma/FASD
Most significant differences
attention
memory
expressive and receptive language
Children and young people with trauma/FASD and trauma/no FASD are more likely to be reported as being:
oppositional
hyperactive
restless/impulsive
inattentive
socially inept
They also have more behavioural problems than the general population

15. Developmental differences
Developmental age does not equate to chronological age

16. Young people with FASD Chronological age 18 years
on the verge of independence
has a plan for their life
budgets their money
organises, accomplishes tasks at home, at school or in job
Developmental age 18 going on 10
needs structure and advice
lives in the “now”, little ability to project
works better with an allowance
needs to be organised by adults
Yukon Education, Making a difference 2006

17. Young people with FASD find themselves constantly in trouble without understanding why
Information processing deficits can lead to their behaviour being misinterpreted - examples
More examples included in handout
Yukon Education, Making a difference 2006

18. FASD and justice
Children and young people with FASD can be involved in high risk, socially unacceptable and harmful behaviours and are at high risk of engaging with the justice system.
International research:
2013 review reported rates for people in prison and correctional facilities considered to be at high risk of FASD at 98 to 233 per 1,000
Canadian data – 23% youth in juvenile detention had a diagnosis of FASD
Systematic review - 19x greater risk of person with FASD to be incarcerated

19. What is the Banksia Hill project adding to the evidence base?
Providing an estimate of the prevalence of FASD and other neurocognitive impairments among young people in detention in WA
Identifying range and frequency of neurocognitive impairments among sentenced young people at Banksia
Gaining an understanding of the impact of the project for young people and their families, Banksia staff, others in YJS, staff from Child Protection and Family Support (CPFS)
Exploring existing management strategies that have positive outcomes for young people and staff at Banksia and developing new strategies in collaboration with YJS staff and young people
LATER … Designing a FASD screening tool for use
in community YJS settings

20. Assessments
Multi-disciplinary diagnostic team comprising paediatrician, occupational therapist, speech pathologist and neuropsychologist
Project researcher also collates family information including prenatal alcohol exposure if available and takes a photo of the young person’s face
Diagnostic criteria from the Australian Diagnostic Instrument are used to identify FASD
Neurodevelopmental impairments and other conditions (Intellectual Disability / ADHD / Autism) may be identified
Consequences of undiagnosed FASD
Broad and far reaching effects
Undiagnosed FASD adversely affects their development
Loss of education
Loss of opportunities
In turn affects whole families and the wider community
Increased costs of health
Increased costs of welfare services
Reduced educational opportunities
Reduced employment
Comorbidity with other disorders:
Autism
share similarities with regard to social and communicative functioning
children & adolescents with FASD/ASD significantly more behaviour problems
FASD/ASD comorbidity 25%-30%
ASD may ‘hide’ FASD and diagnosis of ASD more acceptable and expedient for receiving school support
ADHD
most frequent comorbidity of FASD 60%
ADHD diagnosis 94% of children & adolescents with heavy alcohol exposure
impairment of executive function may be a common underlying factor in ADHD and FASD
children with FASD have difficulties with encoding and shift, and children with ADHD without FASD have problems with focus and sustain
Medications
Complex cognitive and psychological deficits often predispose affected individuals to a higher degree of sensitivity to medication, increased risk of over medication, susceptibility to changes in dosing and responses to certain drugs
Use of SSRIs in children & adolescents with FASD does not hold and can lead to unmask a bipolar diathesis
There is weak evidence that children with FASD and ADHD may have a better response to dexamphetamine than methylphenidate (Ritalin)
Management of inattention and hyperactivity may improve learning and ameliorate the common secondary disabilities associated with FASD

21. Assessments for FASD – more detail
search for “Banksia Hill FASD protocol paper” Study protocol for screening and diagnosis of fetal alcohol spectrum disorders (FASD) among young people sentenced to detention in Western Australia Passmore H, Giglia R, Watkins R, Mutch R (et al) BMJ Open June 2016

22. How is evidence from the Banksia Hill project making a difference to practice?
building evidence to support the Western Australian Youth Justice Framework
assisting individual young people in WA: while in the detention centre; planning for release; on release orders in the community; in education, training, at work and socially in the community
building future capacity of Youth Justice Services staff in WA to expand understanding and implementation of person-centred care
building future capacity of Child Protection and Family Support staff in their therapeutic care for young people in WA involved with the YJS
workforce development resources will be made
available nationally (from 2017)

23. 2015-2018 Youth Justice Framework Western Australia
Department of Corrective Services Building the evidence base to support to transformational change

24. young people and families
Young person gives assent, family consents, info from social and clinical assessments considered by multi-disciplinary team, MAY or MAY NOT have FASD or other neurodevelopmental impairment identified - all receive a report with:
Strengths and Difficulties
Strategies and Recommendations

25. Summary report for Department of Corrective Services database records
Domain
Strength
Difficulty
Impaired
Cognition (visual & verbal thinking & problem solving) 
Attention/Sensory (paying attention, processing sensory info)
Executive Function (multi-tasking, inhibition, working memory, reasoning)
Memory (memory of information over time)
Visual memory
Language (understanding and using verbal language, verbal reasoning and verbal short term memory)
expressive
receptive
Motor Skills (gross and fine motor, balance)
Academic Skills (maths, reading, writing, spelling)
literacy
maths

26. Example 1 - notes in a report
Strengths and Difficulties
Is a bright young person who may perform better on practical tasks that follow a step-by-step procedure
Has difficulty remembering longer pieces of heard information
Strategies recommended
If possible, break down instructions to include only 2 parts. When longer instructions are necessary, repeat them and check that he is able to repeat the instructions in his own words.

27. Example 2 - notes in a report
Strengths and Difficulties
Has strong language skills in areas such as vocabulary, semantics (meanings of words and concepts) and stories using written language.
Has difficulty presenting large amounts of information verbally and understanding non-literal language.
Has difficulty with reading comprehension and spelling
Strategies recommended
Language
Reading, comprehension and spelling

28. Example 2 cont - notes in a report
Language
If he is required to present larger pieces of information verbally, such as for a school task, allow him time to prepare and practice it. Encourage him to write it out first to make sure he has included all the information he wants to include.
Encourage him to write down his sentences and extend them with more complex connectives such as ‘neither’, ‘however’, ‘although’, ‘unless’.

29. Example 2 cont - notes in a report
Reading, comprehension and spelling
Implementing programs such as ‘Language! A Literacy Intervention Curriculum’ might be beneficial in improving his reading skills. This program teaches reading as part of an enriched total language experience that integrates reading, writing, spelling, grammar, language use, and vocabulary. The program also offers an intensive professional development program for teachers.
Encourage him to check and double-check work, as well as use a pencil and eraser to allow for quick correction of mistakes. Enable him to use a portable electronic spell checker (preferably one that includes games, as well as spell- checking capabilities) and work with crosswords, wordsearch puzzles, spelling board games and consider using a spelling tutor software package on a computer.

30. Example 3 - notes in a report
Strengths and Difficulties
Has skills in written language, able to express complex ideas in stories or notes, and as Hip Hop
Has difficulty with expressive language, very limited verbal responses
Strategies recommended
Ask him to write descriptions of an event on post-it notes and give him time and space to place in time/location/person order
Promote his song-writing by encouraging him to ask others to perform his works and create opportunities for performance

31. Example 4 - notes in a report
Strengths and Difficulties
His expressive language is slightly better than his receptive language. This will make him appear more able than he actually is, particularly because he is very social.
He is very sensitive to noise.
Strategies recommended
Help him to understand information by making it clear and with simple steps (pictures and simple words).
Place him at the front of the class and away from distractions. He may benefit from ear plugs to reduce noise impacts.
Consider walking meetings – he likes to ‘move’ and likes physical activities.

32. FASD – not one size fits all
Memory and learning deficits
Attention problems
Deficits in abstract thinking (maths, money and time)
Difficulty processing, storing & retrieving information
Inability to make decisions
Impulsivity, hyperactivity & distractibility
Slower auditory pace
Increased agitation, irritability and aggression
Inability to understand cause & effect (particularly when relating actions to consequences)
Difficulty understanding social expectations and personal space
Person with FASD has slowed cognitive functioning (thinking pace) – may say I don’t know, appear to ‘shut down’ or need minutes to generate answer rather than seconds
Memory impairment means difficulty in learning from past mistakes and often the same mistakes are made over and over again despite increasingly severe consequences
Inconsistent memory or performance means remembering a task for 2 days and then forgetting the task on the 3rd day
Inconsistent performance contributes to labelling the person as belligerent, wilful or not trying
May only pick up pieces of information or instructions (slower auditory pace) – need to give 1 direction or instruction at a time
Ability to repeat rules/instructions but inability to put them into action/apply these rules
May talk excessively but unable to have meaningful exchange
Perseveration - Person with FASD may have problems switching thoughts, stopping activities or moving onto a new task and often reacts strongly to changes in setting, program or personal
Judgement, cause and effect reasoning requires abstraction
Common for person with FASD to experience difficulties in conceptualising time, understanding mathematical concepts and/or value of money
Inability to recognise danger or distinguish danger from safety, friend from stranger, fantasy from reality
Person with FASD may be overwhelmed by sensory input and unable to filter out extraneous stimuli
Increased agitation, irritability, and aggression
Some underact to pain, others tactile stimulation can be an issue

33. When working with people with FASD there are 8 Magic Keys to remember
1. Concrete 5. Simplicity
2. Consistency 6. Specific
3. Repetition 7. Structure
4. Routine 8. Supervision
Deb Evensen & Jan Lutke (1997)

34. Workforce development
building future capacity of Youth Justice Services staff in WA to expand understanding and implementation of person-centred care
building future capacity of Child Protection and Family Support staff in their therapeutic care for young people in WA involved with the YJS
workforce development resources will be made available nationally (from 2017)

35. FASD Primary Disabilities: Secondary Effects:
Memory and learning deficits
Attention problems
Deficits in abstract thinking (maths, money and time)
Difficulty processing, storing &
retrieving information
Inability to make decisions
Impulsivity, hyperactivity & distractibility
Slower auditory pace
Increased agitation, irritability and aggression
Inability to understand cause & effect (particularly when relating actions to consequences)
Difficulty understanding social expectations and personal space
Secondary Effects:
Trouble with the law
Trouble at school
Mental illness
Reduced self-esteem
Substance abuse
Unemployment
Homelessness
Lack of education
Inappropriate sexual behaviour
Often lead to
Person with FASD has slowed cognitive functioning (thinking pace) – may say I don’t know, appear to ‘shut down’ or need minutes to generate answer rather than seconds
Memory impairment means difficulty in learning from past mistakes and often the same mistakes are made over and over again despite increasingly severe consequences
Inconsistent memory or performance means remembering a task for 2 days and then forgetting the task on the 3rd day
Inconsistent performance contributes to labelling the person as belligerent, wilful or not trying
May only pick up pieces of information or instructions (slower auditory pace) – need to give 1 direction or instruction at a time
Ability to repeat rules/instructions but inability to put them into action/apply these rules
May talk excessively but unable to have meaningful exchange
Perseveration - Person with FASD may have problems switching thoughts, stopping activities or moving onto a new task and often reacts strongly to changes in setting, program or personal
Judgement, cause and effect reasoning requires abstraction
Common for person with FASD to experience difficulties in conceptualising time, understanding mathematical concepts and/or value of money
Inability to recognise danger or distinguish danger from safety, friend from stranger, fantasy from reality
Person with FASD may be overwhelmed by sensory input and unable to filter out extraneous stimuli
Increased agitation, irritability, and aggression
Some underact to pain, others tactile stimulation can be an issue

36. The attached diagram is an overview of the ideal continuum of care for FASD intervention for communities.  It is based on expert consensus and literature review.  Over time, models are being developed for each part of this continuum of care by researchers and clinicians. A full evidence base has not yet been created. 
Communities can view this diagram as a model of the services a community would ideally create for individuals with FASD or prenatal alcohol exposure, and the families who care for them.  Advocates can help by letting policy workers know what services are lacking in their community, or what research funding is needed to create an evidence base in FASD  intervention. 
Families Moving Forward Program (for 3 – 13 yr olds involves 9-11 months of behavioural consultation and education sessions with parents)
Some of the aims :
Support parents and help them better understand their children who are affected by prenatal alcohol
Give parents new skills and strategies to use when caring for their children with FASD
Enable teachers and health care providers, as well as family members, to recognize the signs of FASD
Train health care providers in evidence-based services they can offer to families with alcohol-affected children
Encourage family progress in a positive direction
Restore hope and optimism to families caring for children with FASD
Reduce the chance that children affected by prenatal alcohol will have secondary disabilities later in life

37. Resources
Telethon Kids Institute Alcohol, Pregnancy & FASD
Resources for justice professionals
FASD & Justice
6 Videos – available from website under professional development
National Health & Medical Research Council Guidelines on Alcohol Use
e-learning modules for health professionals involved in FASD diagnosis
Families Moving Forward Program

38. Want to know more?
Noni Walker Banksia Hill Project Alcohol & Pregnancy & FASD Research Program Telethon Kids Institute Visit our website: