vicki russell - national organisation for fetal alcohol spectrum disorders - fetal alcohol spectrum...
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Vicki Russell delivered the presentation at the 2014 Younger People with very High & Complex Care Needs Conference. The 4th Annual Younger People with very High & Complex Care Needs Conference focused on topics such as report on Summer Foundation’s preliminary findings from NDIS Launch sites in Barwon & the Hunter Valley, identify policy & practice opportunities & barriers for YPINH that arise from the NDIS. For more information about the event, please visit: http://www.informa.com.au/youngerpeopleconference14TRANSCRIPT
Vicki Russell CEO NOFASD Australia
Fetal alcohol spectrum disorders: Using a fetal alcohol-neurobehavioural (FA-NB) approach in working with young people
Younger People with Very High and Complex Care Needs Conference, Melbourne June 2014
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Objec9ves 1. Fetal Alcohol Spectrum Disorders & impact
across the lifespan
2. The Fetal Alcohol-‐ Neurobehavioural (FA-‐NB) approach
3. Developing & implemen9ng strategies/ accommoda9ons for community case management & working in custodial seOngs
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Fetal Alcohol Spectrum Disorders & impact across the lifespan
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Fetal Alcohol Spectrum Disorders
• Fetal Alcohol Syndrome (FAS) – 1:1000 • Par9al Fetal Alcohol Syndrome (pFAS)
• Structural abnormali9es
• Face, growth, central nervous system impairments
• Alcohol Related Neurodevelopmental Disorder (ARND) – 1:100 • Func9onal deficits
• Confirmed fetal alcohol exposure
(c) NOFASARD 2013
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Facts • Dose/9me rela9onship across gesta9on
• No known minimum ‘safe’ amount of alcohol
• Impact on the central nervous system
• Every individual living with an FASD is different • Life9me impact of the condi9on
• Cannot rely on IQ as measurement of disability-‐ can range from below normal to above average
• A lower level of adap9ve func9oning (manage daily life) is common -‐ more significantly impaired than low IQ
• Mul9ple systems implica9ons across educa9on, criminal jus9ce, economic support, employment, child protec9on and family support services
• Consider too, the parent who uses alcohol
(c) NOFASARD 2013
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(c) NOFASARD 2013
Paternal alcohol use 1. Low birth weight
2. Impaired cogni9ve skills, increased hyperac9vity in sons of alcoholic fathers
3. Changes in behaviors of sons of alcoholic fathers
4. Low count and altered structure of sperm
5. Lower rates of pregnancies; sons were less fer9le
6. Decreased ac9vity of sperm and lower testosterone levels
7. Effects on epigene9cs, or expression of genes on cogni9ve func9oning
Malbin, FASCETS 2013
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Preven9on Context 1. Society’s ‘love of alcohol’ 2. ‘Othering’ – we target some mothers, some
drinkers, some behaviours because they are not us
3. Values and beliefs perpetuate barriers & limit safety for disclosure
4. FA ocen regarded as the ‘invisible’ disability – denial of the condi9on -‐ too much reliance on facial features missing the neurobehavioural part of the spectrum
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Primary characteris9cs • Developmental level of func9oning • Sensory systems • Nutri9on • Language and communica9on • Processing pace: How fast the brain works • Learning and memory • Abstract thinking • Execu9ve func9oning • Strengths
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Strengths
Crea9ve Ar9s9c Musical Mechanical Athle9c
Hard-‐working Determined Persistent Willing
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Secondary behavioural symptoms
• Easily 9red, fa9gued • Avoidance
• Anxious
• Lonely, isolated
• Shut down; flat affect
• Fearful, withdrawn
• Depressed
• Frustrated, short fuse, angry
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The Fetal Alcohol-‐ Neurobehavioural (FA-‐NB)
approach
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(c) NOFASARD 2013
Malbin, D (2014) Into Ac9on
FASCETS PO Box 69242, Portland, OR 97239 [email protected] www.fascets.org
Malbin, D. (2002) Trying Differently Rather Than Harder. Tetrice publica9ons.
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(c) NOFASARD 2013
The logic model • Alcohol, drugs, other teratogens and trauma
kill cells and cause physical changes in the brain
• Physical changes affect the structure and func9on of the brain
• Behaviors are usually the only symptoms
• FA/NB is an invisible physical disability with behavioral symptoms
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(c) NOFASARD 2013
The conceptual glue
If: FA/NB = brain-‐based physical disability with behavioral symptoms
Then: Recognize and provide accommoda9ons, same as for any other physical condi9on
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Principles of FA/NB 1. Can’t rather than won’t 2. Consider developmental age rather
than chronological age – shics our expecta9ons
3. Realis9c expecta9ons and environmental and social accommoda9ons/strategies
(c) NOFASARD 2013
Assump9ons and comparison
Neurotypical FA-‐NB
Think fast, listen fast Process slowly
Predict, plan ahead Difficulty predic9ng
Mul9-‐task, priori9se One thing at a 9me
Learn, remember, apply informa9on
Memory problems
Inhibit impulses Impulsive
Ignore and manage sensory input
Easily over-‐s9mulated
Problem solve Difficulty problem solving
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Developing & implemen9ng strategies/ accommoda9ons for community case management & working in custodial seOngs
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Case study -‐ Max ! 17 years old, usually lives with mother, known maternal drinking
! Developmental age is averaged at 8, no FAS ‘face’
! Early school leaver -‐ limited literacy and numeracy skills
! Alcohol and other drug use issues/ financial problems ! Difficulty sustaining work
! Periods of deten9on since 12
! Mul9ple diagnoses in childhood – learning disorder, ADHD, conduct disorder and many agencies and interven9ons over 9me. Withdrawn services due to client ‘not trying’
! Case file indicates inamen9on, high support need, agrees to obliga9ons (work, training etc) but does not follow through, confabulates
! Tries hard to please and is likeable and friendly
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Behavioural techniques based on learning theory are used in all systems:
! Paren9ng ! Educa9on ! Jus9ce ! Mental health ! Addic9ons treatment ! Social services ! Others
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Defini9on: Secondary characteris9cs
Secondary defensive behaviors develop over 9me when there is a “poor fit” between individual and environment
Defensive behaviors are normal reac9ons to pain and are preventable Adapted from: Ann Streissguth, 1996
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FA/NB pathway
(c) NOFASD 2013
The absence of understanding + unrealistic expectations + inappropriate interventions = poor ‘fit’ and complex needs
Physical brain
difference
Primary condi9ons
Complex needs
Secondary behaviours
emerge over time and are
defensive
Labelling + behaviour
interventions
poor ‘fit’
Ter9ary condi9ons
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FA-‐NB is not the “diagnosis du jour”
Current diagnoses = behavioural symptoms
FA/NB = Brain difference (dysfunc9on)
Iden9fica9on redefines behaviors
Redefines problems
Redefines solu9ons
Values and values clashes Primary characteristic
Values, expectations
Interpretation / Feelings
Intervention Secondary symptom
Accommodation: Build on strengths
Dysmaturity Act your age Being a baby, Lazy, not trying Frustrated
Punish Anxiety, anger Think younger
Confabulation Honesty Lying, manipulative, “At me” Fear, angry sad
Punish, ground Anger, denial Recognize brain dysfunction, alter communication
Memory problems
Remember “Should” know!! Angry frustrated Remove
privileges Anger, frustration
Accept need to reteach, based on learning strengths
Slow processing pace
Value speed – think fast
Not trying, withholding , on purpose Angry, frustrated
Speed up, yell, embarrass
Shut down, fear, avoidance, withdrawal
SLOW DOWN! Use fewer words
Difficulty generalizing, gets the piece, not the picture
Know and apply concepts in different settings
Breaking the rules, Should understand concepts in all settings Angry, frustrated
Consequence Confusion, anxiety, frustration anger
Show rather than tell, reteach in different settings
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Observe to Find Pamerns: Func9onal neurobehavioral assessment
Are behaviours primary or secondary? Resist interpreta9on
What did you see?
What happened just before?
Describe the seOng, environment
Were there other factors? E.g. unexpected change?
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FASCETS Neurobehavioural screening tool©
1. Developmental level of func9oning: Social skills and adap9ve behaviors
2. Sensory systems, sensory-‐motor integra9on 3. Nutri9on
4. Language and communica9on 5. Processing pace
6. Learning and Memory 7. Abstract thinking
8. Execu9ve func9oning
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6. Learning and Memory 0 1 2 3 4 5 Poor short-‐term auditory memory; may do one
step of three-‐step direc9ons
0 1 2 3 4 5 Says one thing, does another, e.g., “Talks the talk, but doesn’t walk the walk”
0 1 2 3 4 5 Inconsistent performance: “On” and “off” days, “A” on Monday, “F” on Wednesday
0 1 2 3 4 5 Needs to be retaught the same thing many 9mes
0 1 2 3 4 5 Learns a rule in one seOng, may not apply it in a different place
0 1 2 3 4 5 Has trouble remembering and learning from past experiences
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8. Execu9ve func9oning 0 1 2 3 4 5 Difficulty organizing and planning a day
0 1 2 3 4 5 Difficulty geOng started or finishing mul9-‐step tasks
0 1 2 3 4 5 SeOng goals and planning the steps to achieve them is hard
0 1 2 3 4 5 Gets “stuck,” has difficulty stopping doing something -‐-‐ “Can’t let go” in an argument
0 1 2 3 4 5 Has trouble transi9oning, shicing gears; may become angry when interrupted
0 1 2 3 4 5 Upset by unexpected change in tasks, schedule or rou9ne
0 1 2 3 4 5 Upset by changes in environments, e.g., desks or furniture moved, subs9tute teacher
0 1 2 3 4 5 Impulsive, difficulty inhibi9ng responses
0 1 2 3 4 5 Difficulty making links: Hearing into doing, seeing into wri9ng, thinking into talking
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Secondary characteris9cs: 0 1 2 3 4 5 Easily 9red, fa9gued; may show as overac9vity, irritability, and/or tantrums 0 1 2 3 4 5 Anxious
0 1 2 3 4 5 Lonely, isolated
0 1 2 3 4 5 Shut down; flat affect
0 1 2 3 4 5 Fearful, withdrawn
0 1 2 3 4 5 Depressed
0 1 2 3 4 5 Frustrated, short fuse, angry
0 1 2 3 4 5 Gets in trouble if easily manipulated and set up by others
0 1 2 3 4 5 Self-‐harming behaviors
0 1 2 3 4 5 Avoidant, runs away
0 1 2 3 4 5 Remarkable sexual ac9vity; mul9ple partners; unplanned or teen pregnancy
0 1 2 3 4 5 Aggressive
0 1 2 3 4 5 Destruc9ve (not due to curiosity or just taking things apart)
0 1 2 3 4 5 Disrup9ve in class or at work, secondary to anxiety or frustra9on
0 1 2 3 4 5 Talks back, is argumenta9ve, secondary to cogni9ve inflexibility
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Ter9ary characteris9cs 0 1 2 3 4 5 Delinquent; criminal involvement
0 1 2 3 4 5 Trouble at home 0 1 2 3 4 5 Trouble at school or in the community 0 1 2 3 4 5 Social services involvement
0 1 2 3 4 5 Legal system involvement 0 1 2 3 4 5 Alcohol / drug-‐related problems,
addic9ons
0 1 2 3 4 5 Other problems
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Uneven development adolescent
Actual age of person: 18
Developmental age-‐-‐-‐-‐-‐-‐-‐-‐9 Strengths (art, sports)-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐24 Expressive language-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐20
Recep9ve language-‐-‐-‐-‐8 Reading -‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐-‐14 Comprehension -‐-‐-‐-‐-‐-‐7
Poor ‘fit’ = problems FA-‐NB Characteris5c Strategy – expecta5on
Visual learner Verbal instruc9on
Processes informa9on slower
Fast paced, mul9ple instruc9ons
Needs external support Work independently
Difficulty organising Organised and able to priori9se
Concrete thinker Abstract – 9me, cost, impact on others
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Starter strategies for accommoda9ons
1. Think brain and reframe percep9ons 2. Observe pamerns of behaviour/s 3. Iden9fy, build on strengths 4. Write the case plan for the environment:
modify environments for a good “fit” 5. Collaborate, coordinate
Applica9on: Func9onal Neurobehavioral Assessment
A systema9c approach to developing person-‐specific accommoda9ons in all seOngs and managing the complexity of FA-‐NB
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SeOng: Custodial Age: 18 Developmental age: 9-‐10
1 Task or Expectation
2 Brain has to
3 Primary symptoms FA/NB
4 Devel. Age (est.)
5 Secondary behaviors
6 Strengths
7 Accommodations
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SeOng: Jus9ce Age: 15 Developmental age: 12
1 Task or Expectation
2 Brain has to
3 Primary symptoms FA/NB
4 Devel. Age
5 Secondary behaviors
6 Strengths
7 Accommodations
Understand rights
Understand abstract concepts
Difficulty with abstractions
12 Compliance Concrete, literal
Simplify.
Show up for court dates or appointments
Plan, manage time, filter out other issues that arise - priorise
Difficulty with executive functions, planning
14 Denial, defense, blame
Willing, relational
Utilize “external brain” to prevent problems
Comply with orders
Remember what needs to be done, generalize
Poor memory, difficulty generalizing
15 Breach , anger, avoidance, aggression
Determined, persistent
Reduce number of tasks, show rather than tell
Learn from mistakes
Store, retrieve, apply information, inhibit impulses
Difficulty, retrieving, applying information, impulsive
10 Re-offend Wants to please
Establish informed networks to prevent problems
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Addi9onal starter strategies
1. Stop figh9ng for change. Ask: What if? 2. Think younger 3. Give 9me 4. Recognize strengths 5. Slow down speech – use less words 6. Be direc9ve, say what you mean 7. Use visual supports – hand signs, simple drawings
or photographs 8. Don’t give too many choices 9. Re-‐teach, remind on a regular basis
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Review
1. FA/NB is a brain-‐based physical disability 2. Reframe behaviors: Neurobehavioral Screen
-‐ primary, secondary and ter9ary symptoms
3. Applica9on: Fit and accommoda9ons Func9onal neurobehavioral assessment
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Provincial Outreach Program hmp://www.fasdoutreach.ca/elearning/modules-‐guide/modules-‐guide • Learning about FASD (including Kim Barthel – Speaking about
the Brain and Amachment)
• Planning Instruc9on for schools • Crea9ng Posi9ve Behaviour Climate
• Teaching to Strengths and Needs Developing individual educa9on programs
• Transi9oning • Assessment networks
(c) NOFASARD 2013
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References ! MALBIN, D (2013) Into Ac9on: A Training of Trainers in a
Neurobehavioural Approach. Portland, Oregon 12-‐15th March 2013
! MALBIN, D. (2002) Trying Differently Rather Than Harder, Tetrice
! STREISSGUTH, A. (1997) Fetal Alcohol Syndrome: A Guide for Families and CommuniAes. Brookes: USA (Fich Prin9ng 2003)
! STREISSGUTH, A.P., & KANTER, J., (eds.) (2002) The Challenge of Fetal Alcohol Syndrome: Overcoming Secondary DisabiliAes. University of Washington Press: Seamle and London
(c) NOFASARD 2013
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Na9onal Organisa9on for Fetal Alcohol Syndrome Disorders
postal: PO Box 448, Wynyard TAS 7321 telephone: 1300 306 238 email: [email protected] website: www.nofasd.org.au
ABN : 93 833 563 942 Patron: Her Excellency Dame Quen9n Bryce
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