Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1694573754252.pdf (Australia)
RUSSELL FAMILY FETA L ALCOHOL DISORDERS ASSOCIATION Su b m iss i on t o the 2019 I n q u iry into effective approaches to prevention and diagnosis of Fetal Alcohol Spectrum Disorde r [FASO] and st rategies for optimis ing life outcomes fo r peop le wit h FASO B A C I< G ·R O U N D On 9 September 2019, the Senate referred an inquiry into effective approaches to prevention and diagnosis of Fetal Alco hol Spectrum Di sorder [FASD] and strategies for optimising life outcom es for people with FASO to the Senate Community Affairs References Committee for inqui ry and report by June 20 20.
Effective approaches to prevention and diagnosis of FASO, strategies for optimising life outcomes for people with FASO and supporting carers, and the prevalence and management of FASO, including in vulnerable populations, in the education system, and in the criminal justice system - with reference to: [a] the level of community awareness of risks of alcohol consumption during pregnancy [b] the adequacy of the health ad vice provided to women planning a pregnancy, pregnant women and women who are breastfeeding, about the risks of alcohol con sumption [c] barriers that may prevent women receiving accurate, timely and culturally/ethnically appropriate information and advice on alcohol and pregnancy [d] provision of diagnostic services in Australia including capacity, training, integration and diagnostic models in current us [e] the prevalence and nature of co-occurring condition s and of misdiagnosis of FASO [fl international best practice in preventing, diagnosing and managing FASO [g] awareness of FASD in schools, and the effectiveness of systems to identify and support affected students [h] the prevalence of, and approaches to, FASO in vulnerable populations, including children in foster and state care, migrant communities and Indigenous communities Russell Family Fetal Alcohol Disorde rs Association [rffada] [ M 0412 550 540 [ E elizabeth@rffada.org [ W rffada.org [ ABN 675309632 Page 1 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 55 [i] the recognition of, and approaches to, FASO in the criminal justice system and adequacy of rehabilitation responses Li] the social and economic costs of FASO in Australia, including health, education, welfare and criminal justice [kl access, availability and adequacy of FASO support available through the National Disability Insurance Scheme, including access to effective and early intervention services for individuals diagnosed with FASO [I] support for adults with FASO and for parents and carers of children with FASO [ml progress on outstanding recommendations of the House of Representatives Standing Committee on Social Policy and Legal Affairs report, FASO: The Hidden Harm, tabled on 29 November 2012 [n] the effectiveness of the National FASO Action Plan 2018-2028, including gaps in ensuring a nationally coordinated response and adequacy of funding [o] the need for improved perinatal data collection and statistical reporting on FASO and maternal drinking; and [p] any other related matters rffada BACKGROUND The Russell Family Fetal Alcohol Disorders Associat ion [rffada] is a national not for profit health promotion charity supporting parents and caregivers around Australia .
The rffada was established by vo lunteers has been operated by volunteers since 2007.

The rffada is the only national organisation in Australia to provide on line and face to face support to parents and caregivers, and training to providers and interested organisations under a no blame no shame ethos.

As this is a parent organisation our submission will comprise comments from rffada parents and caregivers [the real experts on this condition].
rffada S UB M I SSION This submission is from the parents and caregivers supported by the rffada and who support the rffada.

In this submission, the rffada will be specifica lly focusing on the following points.
It is our goal for those parents connected to the rffada to write this submission : [a] the level of community awareness of risks of alcohol consumption during pregnancy Russell Family Fetal Alcohol Disorders Association [rffada] [ M 0412 550 540 [ E elizabeth@rffada.org I W rffada.org I ABN 675309632 Pa ge 2 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 55 [b] the adequacy of the health advice provided to women planning a pregnancy, pregnant women and women who are breastfeeding, about the risks of alcohol consumption [e] the prevalence and nature of co-occurring conditions and of misdiagnosis of FASD [g] awareness of FASD in schools, and the effectiveness of systems to identify and support affected students [h] the prevalence of, and approaches to, FASD in vu lnerable populations, including children in foster and state care, migrant communities and Indigenous communities [i] the recognition of, and approaches to, FASD in the criminal justice system and adequacy of rehabilitation responses that Funding for F ASD must ALWAYS be allocated to organisations with direct connections to parents and caregivers.
It should be a requirement of the a Memorandum of contract Understanding [MOU] be developed between parents I parent organisations and the primary funding recipient that is not just about having the MOU signed, but for parents to have an ongomg the organisation and the project until its completion.
relationship with rffada [kl access, avai lab ility and adequacy of FASD support available through the National Disability Insurance Scheme including access to effective and early intervention services for individuals diagnosed with FASD [I] support for adults with FASD and for parents and carers of children with FASD T H E LEVE L OF COMMUNITY AWARENESS OF RI SKS OF ALCOHOL CONSUMPT I ON DURING PREGNANCY The rffada recommend s that the government provide and/or sup port in itiatives that include consultation with parents and caregivers that enable the implementation of a nat ional Public Awareness Campaign for the prevention of FASD disorders.
rffada 2017 Comment from Parent 'A ' I am the mother of a person living with FASO.

I became pregnant as a young person, and as is with many [if not most] it took several weeks before I knew I was pregnant [yes, I was on contraceptives - no, they are not 100% effective].

Education is needed here because we all know a mother who didn 't know of her pregnancy for several weeks.

My child is now 33 years old.


Although always "quirky", significant and increasingly impactful differences were obvious from the age of 9 years.
Russell Fam ily Fetal Alcohol Disorders Assoc iation [rffada] I M 0412 550 540 I E elizabeth@rffada .org I W rffada.org I ABN 675309632 Page 3 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 55 My child was bright and pleasant, so the school system saw nothing of great concern, her differences [difficulty following in class, significantly slower, unable to complete work, not understanding] were seen as shyness and anxiety.
She was unsupported in school and was unable to achieve the standards she set herself and/or those of others.

The medical system also let my child down - when attending as a child, serious symptoms were either ignored, poorly understood and/or left undiagnosed and untreated.

Apparently, she was to just "grow out of it".

The shame and significant emotional and mental health damage this caused my child continues to be felt decades later.
As an adult, increasingly difficult and life-threatening health impacts continued - my child BEGGED for help from several medical practitioners, visibly deteriorating - these pleas were ignored with a prescription for anti-depressants and admonishment to "get on with it" [THIS is what an individual living with FASO is physically unable to do].

As a parent watching her child slowly die - I took charge of finding medical help.

Now we were both being dismissed and ignored.


Still we asked for the tests and the referrals, we sold our most prized possessions, heirlooms in order to pay for them.

One Doctor was so antagonistic that they refused to give a referral to a specialist [we wanted to see a haematologist for chronic iron deficiency which my child was already receiving infusions but with no diagnosed cause].

In the majority of our dealings with the medical profession - we were faced with ignorance, dismissal and derision .
Most appointments ended with my child in tears.

It was a sou/ destroying experience.

It took three years [after taking charge of my adult child's health care] of consistently pushing up against resistance to finally get a diagnosis, by this time - my child was 30 years old, 20 years after beginning to ask questions about what was happening.

My child is now also diagnosed- is it any wonder?- with anxiety and depression .

My child is still waiting for NDIS funding .


Comment from Parent ' B' FASO is a very real and often invisible [unless you are the carer!]

disability- it is forever life altering, not only for the individual, but for their family and all those in their environment.

We need a national campaign to commence immediately to educate and advise: o The general population o The medical profession [the lack of education of FASO within the medical degree borders on neglect!]
o The education system : schools [teachers and students] o Emergency Services [police and ambulance] o NDIS: Ensuring inclusion and accommodations within the NOIS scheme- providing long-term sustained support o Funding for services including housing Russell Fam ily Fetal Alcohol Disorders Association [rffada] IM 0412 550 540 IE eliZJ\1cN1f fff'flU' rfli s'ft{f:adaorg I ABN 675309632 We need a public hea lth campaign to for increa<;c. We need clear info1111ation Page 4 community awareness Parent J Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 55 This is but very short broad strokes of the real tragedy of what it is to live with FASO.
What is currently available, to prevent FASO and to support those living with it, is woefully inadequate and the costs to our society and culture will be felt for generations.

Action must be taken to safeguard the future, a large-scale national education campaign is paramount, else the damage will only continue to increase.
I am happy to stand before you all to impress upon you how life altering and prevalent pre-natal exposure to alcohol is and am grateful for the assistance and support of the RFFAOA in giving us a voice.
THE ADEQUACY OF HEALTH ADVICE PROVIDED TO WOMEN PLANN I NG A PREGNANCY, PREGNANT WOMEN AND WOMEN WHO ARE BREASTFEEDING, ABOUT THE RISKS OF ALCOHOL CONSUMPTION Ensure that any parent who brings his or her child for a consultation regarding FASO, obta in s suitab le and appropriate options during consultation and referral and there shou ld never aga in be written on a child's record, 'suspected FASO' .
rffada 2017 ale1i to be A national media campaign on tele, ision which ,vill not only prO\ idc parents and parents with critical infom1ation on alcohol and pregnancy but will teachers.

medical professionals.

service providers, NDIS staff and others that just isn ' t acknowledged because it by the government right now, docsn ' t mean real it disability.
isn ' t a The rffada recommends that the government provide and/or support initiatives that enable the implementation of Public Awareness Campaigns for the prevention of FASD disorders that include: Parent E o Long-term sustainable strategies to enhance primary, secondary and tertiary prevention efforts within a community development approach across all states and territories to raise the awareness of the risk of alcohol use during pregnancy o Primary prevention strategies that involve school-based educational programs; early recognition; treatment of at-risk women; and community-sponsored, culturally appropriate programs o Resources that provide a clear and consistent message about alcohol use during pregnancy in line with NHMRC and World Health Organisation guidelines for a healthy pregnancy o Programs aimed at surveillance of pregnancy exposures to alcohol and their outcomes in order to capture the true incidence of FASD and enable targeting and evaluation of prevention efforts .
NB There has only been one surveillance program which was undertaken by the Telethon Institute for Child Health Resear~h 1 and the results have been cited by those who established the program as clearly being under-ascertained.
1 [http ://www.a psu .org.a u/index.cfm ?object id= D7C9C8A 7-919E-08FS-BOS 1C75 7 D7 4FDD9B] Russell Family Fetal Alcohol Disorde rs Association [rffada] [ M 0412 550 540 [ E elizabeth@rffada.org [ W rffada.org [ AB N 675309632 Page 5 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 55 The Lililwan Project2 which was undertaken in the Fitzroy Valley in Western Australia was the first population-based study on FASO in Australia however it was focusing solely on the Indigenous communities of Fitzroy Crossing and Halls Creek and will not be representati ve of the general Australian population base.
o The labelling of alcoholic beverages and warning posters in hotels with a message such as "Alcohol may harm the unborn child - No alcohol is the safest choice for a healthy pregnancy."

The rffada has designed and printed posters for free download 3 and distribution .
The Foundation for Alcohol Rehabilitation and Education [FARE] has developed submitted images and wording for the labelling of alcohol 4 and warning posters o The Australian Medical Association to acknowledge FASO and accept that it is a major health concern and has taken action to update their Clinical Practice Guidelines in relation to the diagnosis of FASO [The Telethon Institute for Child Health Research in Western Australia surveyed all medical practitioners in Western Australia 5 and found that only 2% felt prepared to 'deal with FASO'] o The Australian Medical Association implement education programs for its members to bring them up to date with all aspects of the diagnosis and management of this disability for example: o Becoming familiar with the screening tools that are available to diagnose the condition in children at various ages o Understanding the importance of early intervention should behavioural or physical abnormalities consistent with FASO be identified o Recognising the crucial role General Practitioners can play in prevention by asking women about their drinking habits, whether they are pregnant o Ensuring that any parent who brings his or her child for a consultation regarding FASO, obtains suitable and appropriate options during consultation and referral.
o Free diagnostic clinics in each capital city in Australia.

o There is an urgent need for the development of FASO treatment services.

Current services would be enough if staff were adequately trained in the delivery of FASO related services.

2 [ www.

ichr.

uwa.

edu.

au/ fasdprajectj 3 [http://rffada.org/fasd/brochures-forms/] [http://www.

fare.erg.a u/wp-content/upload s/2011/11/ME DIA-RE LEASE-November-9-FARE-Feedback.
pdf?9d7bd4] 4 s Health professionals' knowledge practice and opinions about Payne J, Elliott E, D'Antoin e H, O'Leary C, Mahony A, et al.
[2005] Australian and New Zealand Journal of Public Health;29[6] :558-564 Russel l Family Fetal Alcohol Disorders Association [rffada] I M 0412 550 540 I E elizabeth@rffada .org I W rffada.org I ABN 675309632 Page 6 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 55 THE AND NATURE OF CO - OCC U RR I NG CONDITIONS AND MISD I AGNOSIS O F FASD PREVALENCE FASO cannot be taken in isolation .
It must be considered in terms of the other issues that co-exist - medical, behavioural and societal.
For example : l~ Dom estic Violence Behavioural Problems Mental Health Problem s 1 1/- &ttlf,,,ir,w ~ ----.... Acad emi c failures "' Heart problems Inappropriate Sexual Behaviour Petty Crime BEST PRACTICE IN PREVENT I NG, DIAGNOSING AND MANAGING FASD The following is a collection of comments from parents and caregivers based on the following question: How h a v e yo u m anaged to g et your a dul t c h i l d d i a g n osed in A u st r a l i a?

■ No, finding it quite difficult.


Does genetic testing pick up a gene for FASO or does it just cancel out possibility of it being something else?

■ My understanding is in Victoria there is one psychologist that can diagnose adults, she is booked up all year and wasn't taking appointments ■ It has not happened.
We are still waiting Russell Fami ly Fetal Alcohol Disorders Association lrffada] I M 0412 550 540 I E elizabeth@rffada .org I W rffada.org I ABN 675309632 Page 7 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 55 • • • It is such a difficult thing to achieve especially at an affordable cost!

I hope it improves over the next few years!


I don't understand why it isn't subsidised, will be about the seventh time my youngest daughter's dad is going to jail.

Been about ten to fourteen years of taxpayer funds it's a no brain er but departments and government either can't get together on issues or they hand ball it to someone else Is t he re a FASO Cl in ic or a p a ed i at r icia n di ag n o sing in yo u r to wn ?

• Nope and nope • Westmead Children's Hospital.


Was Elizabeth Elliott now I think someone else but I never got any assessment and I could never get to speak to her so really not helpful for NDIS purposes • Nope I have to travel to the Sunshine Coast.

It's just opened apparently.

We were firstly referred to the Gold Coast, but they say we are out of their jurisdiction so Sunshine Coast it is • Near Cairns.

Or Alison Tigg Cairns Childrens Clinic - she is AMAZING • Or Doug Shelton - Gold Coast Clinic.
QLO • Pretty sure Or Bernadette Penlaque has done Doug's training.

She is in Ipswich.

Dr Paul Koch diagnosed my oldest • Child Development Unit at WCH Adelaide has been a great help to us • I'm in Rosebud, Melbourne, Katrina Harris was our Paediatrician.

She is starting up a diagnostic unit at Monash Hospital, Clayton at the end of the year .... but we saw her at Bayside Children's Clinic in Highett.
It's taken 6 months, but our four-year-old twins now have formal diagnosis • Dr Sunday Pam in Rockhampton but he's still streamlining the process.

He trained in Gold Coast too • Dr Rob Wishart - Better Life Psychology in Kedron, Brisbane In addition, it is clear now from research undertaken in Canada by Dr Svetlana Popova, that there are many conditions which are caused through prenatal alcohol exposure.

When a diagnosis is confirmed, a workup of the child should also take place .
For example, outlined below are some of the more common issues associated with prenatal alcohol exposure: MENTAL HEAL TH / INTELLECTUAL DISORDERS 6 Popova, Svetlana Russell Family Fetal Alcohol Disorders Association [rffada] [ M 0412 550 540 [ E elizabeth@ rffada.org [ W rffada.org [ ABN 675309632 Page 8 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 55 Acute serous otitis media Benign neoplasm of middle ear Centra l hearing disorder Chronic serous otitis media Conductive hearing loss Congenital malformations of ear Mixed conductive and sensorineural hearing loss Nasal cavity and accessory sinuses SPEECH AND LANGUAGE Expressive language disorder Receptive language disorder Speech articulation disorder Stuttering [stammering] RESP/RA TORY Acute bronch iti s Other specified pulmonary heart diseases SKIN Haemangioma, any site Hypertrichosis SCHOLASTIC ISSUES Specific developmental disorder of scho lastic skills Underachievement in school TEETH/ JAW Disturbances in tooth formation Major anomalies of jaw size DEVELOPMENTAL PROBLEMS Childhood autism Developmental disorders of speech and language ATTENTION AND ACTIVITY Attention deficit hyperactivity disorder Short I impaired attention span I problems I distractibility HEART Atrial septa I defect Atrioventricular septa l defect Benign and innocent cardiac murmurs Card ia c lesions Congenita l heart disease Congenital malformation of heart Dextroca rd ia KIDNEY/ BLADDER / URETER / PENIS Duplication of ureter Ectopic kidney EYE/ VISION Amb lyopia ex anopsia Astigmatism Congenital ptosis Epicanthal fold s I broad epicanthus I prominent epicanth ic fold s Myopia Anxious [avoidant] personality disorder Bipolar affective disorder Dependent personality disorder Dissocial personality disorder Dysthymia Intentional self-harm Irritability and anger I hostility Menta l and behavioura l disorders due to use of alcoho l Mental retardation Nonorganic psychosis Non-organic sleep disorders Obsessive-compulsive disorder Other
 persistent mood [affective] disorders Other recurrent depressive disorders Other tic disorders Severe depressive episode without psychotic symptoms I severe depressive episode with psychotic symptoms Tremor, unspecified BEHAVIOUR DISORDERS Conduct disorder Oppositional defiant disorder Conduct I behavioural problems I disruptive behaviour I impulsivity MOTOR FUNCTION Specific developm ental disorder of motor function Gross motor and fine motor development SEIZURE DISORDERS Epilepsy I seizure disorder Loca lisation-re lated [focal] [partial] symptomatic epi lepsy and epileptic syndromes with comp lex partial seizures Spastic hemiplegia PROBLEMS OF IN UTE RO / NEWBORNS / BABIES Congenital hypotonia Feeding problems of newborn Non-specifi c symptoms peculiar to infancy Other low birth weight Other preterm infants Prenatal I postnatal growth retardation I deficiency BRAIN Congenita l hydrocephalus Congenital malformation of brain, unspecified Congenital malformations of corpus ca llosum Microcephaly Other reduction deformities of brain Other specified congenital malformations of brain Other specified congenital malformations of spinal cord Russell Fami ly Fetal Alcohol Disorders Association lrffada] I M 0412 550 540 I E elizabeth@rffada .org I W rffada.org I ABN 675309632 Page 9 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 55 Nystagmus and other irregular eye movements SKELETAL Cleft lip Cleft palate, unspecified Spina bifida COM M ON M I SD I AGNOSES Auti sm Spectrum Disorde r Language disorder Otitis Meol1a Heart problems Developmenta l Delay .
- -- Intellectual Disability ADJi{i), Oppositional Defiant Disorder Reactive At tachme nt Disorder \.. ' " "- Borderlin e Persona lity Disorder Ant1-soc1al Personality Disorder Fetal Alcohol Spect rum Disorder A W ARE N ESS O F FAS D I N SC H OOLS AND TH E EFF EC TI VEN ESS O F SYST EM S TO I DE N T I FY A N D SUP PO RT A FFECT ED ST U D EN T S Co m m e n t f r om Pa r en t 'C' So, as a parent we knew we would need as much support as possible to allow our child to lead a full and independent life.
Early intervention was very important, and we enrolled her into a preschool for children with special needs.

Here, her disability was accepted.

We worked as a team to get her talking and walking and socialising.

We were told she was coming out about half her actual age.

Then it came to big school time!

We were shocked to find that FASO was not an accepted disability or diagnosis by the Department of Education.

We phoned many Teachers and parents working together to achieve best outcomes for the child.
Understanding FASO Russell Family Fetal Alcohol Disorders Association lrffada] I M 0412 550 540 I E etB?l)ibei 1~@ilrl'lada.1:lilgl1 Wr{fad ~~g:OUINITI'6lm•d t E'.llge 10 help in their learning.
Parent B Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 55 schools with special units, only to be told that before the age of 8 or Year 3, unless our daughter had a diagnosis of Autism to go with her FASO, she didn't qualify for any positions in a unit as they were classed as 'multicat' classes.

A child who was half the children's size and half their age brain-wise, had to go into a mainstream school for three years.
A child who drowned, who become discriminated against by staff, called useless and a waste of time, a child who came home in tears for three years because FASO was not on the Education Department list and according to her school's Deputy Principal was a self-inflicted disability.

I am damn well sure a baby does not put their hand up to drink alcohol while in the womb.

Year 3 saw her transferred to a school with an IM class and hope of a fresh look at school.
WRONG I I I The current teacher has had no training, no knowledge of FASO.

As a parent I have brought books and I have given them to the teacher to read.

She says she has read them but has still called my child stupid, still removed all visuals, still taken away counters so she stumbles over her maths .. .

complains because I asked her to remind my daughter to put her hearing aid back in or to wear her glasses ... My child has an invisible to most disability.
No, she doesn't look like she has Down Syndrome.

She doesn't use a dog to guide her about, or a wheelchair ... but her disability is real.

It doesn't just happen when she turns eight, it happens before she is born, this is what the Education Department needs to acknowledge and act on.

Those first three years are a crucial learning period.

development for Professional teachers specifically for FASD.

These children need an IM class that caters for FASO.

For sensory, for anxiety .. .


A child needs to feel self-worth, and to be noticed and praised, not sat in a corner and ignored till they are eight.

Kindergarten, this is when it needs to happen.

Child abuse does not need to happen in schools, children have a right to a safe and happy learning experience, sadly they are not getting this.

Parent W Mandatorv teachers in FASO .
training for Parent A Russell Family Fetal Alcohol Disorders Association [rffada] I M 0412 550 540 I E elizabeth@rffada.org [ W rffada.org I ABN 675309632 Page 11 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 55 Basaraba [2016] suggests that collaboration and communication is essential through the voices of parents and teachers who tentatively navigate their way through the intertwined educational, social and emotional needs of Australian students with FASO, it was accentuated that a paradigm shift in the vital role communication and collaboration between parents, educational staff and professional support personnel plays is essential.
Parents, classroom teachers and other community members, report that strong two-way communication and collaboration are essential in providing classroom teachers with a greater insight to the complexities faced by students with FASO in the education arena .

Through continued informative communication and collaboration with parents and professional education support staff, Australian classroom teachers will be better equipped to provide an inclusive, supportive and applicable pedagogy.
little knowledge about There was none to FASD in our school systems here.

They usually treated those with diagnoses like they so kids fail.

We would any other diagnosis hear.

'your child knows this because they did it yesterday - they are just la/y they just don ' t want to do the work'.

We often hear this on top of' punishments of loss of recess.

mandatory atier school program [two hours] and moved to hallway.

Peers learn from this that 'those' kids are weird stupid.

mean.
mean.

undesirable and to steer clear of them so others don't see you as a friend.

Then comes the bullying and they start believing what they are repeatedly hearing from their peers and educators.

Parent S There is a fundamental need for teachers, parents and communities to have concentrated knowledge with regards to the nature of FASO as well as the clearly identified difficulties faced by individuals affected by FASO.
Basaraba [2016] revealed that currently, within Australian education departments, there is an absence of accessible appropriate resources and research to guide educators in their quest of ensuring ethical and appropriate situated practice for students prenatally exposed to alcohol.
Through this in-depth knowledge and an understanding of the complexities faced by students presenting with FASO, educational staff will have the more appropriate and necessary information, and therefore be responsive to the social , emotional and academic needs of students with FASO.
The Framework for Achieving Inclusion of Australian Students [Basaraba 2016] w ith FASO draws attention to the importance of educational systems and structures to be developed in order to provide national guidelines and policies to support educational staff in developing rich curriculum programs inclusive of the unique complex challenges faced by students with FASO.
Currently within Australia, the Australian government mandates that every school is to have student engagement policies that articulate the expectation of the school community regarding strategies that address bullying, school attendance and behaviour.
The data from Australian researcher and education practitioner Basaraba [2016] indicates the need for clear expectations of respectful and informed inclusivity practices and values that should be incorporated within this student engagement policy and which We in California are working on a piece of legislation to put F ASD under special ed eligibility.
Alaska has t1ied it and is finding tremendous success as there is less Russel l Family Fetal Alcohol Disorders Association [rffada] I M 0412 sscd~91tmpj~pi)l(,)'i@rfflai:lsjqrjg'j Y(r(W:ia or~ jy\BN E(Ztllm!§n)onf:si~e 12 expulsion and academic failure.

Parent G Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 55 complement the Disability Standards for Education 2005 .
In the 2012 Review of Disability Standards for Education, it was identified that the development of a culture of inclusion, in which diversity is valued, is crucial , not simply the implementation of an inclusive curriculum [Department of Education, Employment and Workplace Relations 2012] .

We tried hard to educate teachers about FASO but found that had neither lime or inclination to read any matc1ial [we did take care to keep everything we sent them brief and accessible].
Most said they knew all about FASO.

bu1 it was clear they didn't.

lt was only after we got the diagnosis of Autism that we v-.

ere able to get meaningful help.

Even 1he suppoti class teachers needed to he educated in FASO.

I wou ld like to see FASO given the same recognition and speciali sed suppo1is as Autism .

The support cla" ses can even be mixed as long as the teachers are educated in both .
In supporting the culture of inclusion, The Framework for Achieving Inclusion of Australian Students with FASD also stresses the need for all teachers to have appropriate knowledge of FASD .

This includes Australian Universities making certain that pre-service teachers enter the workforce armed with the knowledge that FASD exists along with an understanding of the unique and intertwined learning difficulties faced by Australian children and young people with FASD.
Pre-service and professional teachers should also be aware that although Australian prevalence rates are currently unknown , children and young people w ith FASD will be in classrooms, both diagnosed and undiagnosed.
Although some educational staff may view inclusivity as adding to their workload, the classroom teachers who participated within this research and who are taking a leadership role in meeting the complex learning needs of students with FASD highlighted how inclusive practice, a fundamental right to all students, is easily actioned through viewing the Au stralian curriculum through an inclusive differentiated lens.
Parent H Currently within Australia, no systematic research exists that defines the educational needs of students with FASD or the appropriate educational practice for meeting their complex learning needs.

At present, educational professionals are relying on information gathered from parents and internationally based websites for support, information and educational techniques.
THE RECOGNITION O F, AN D A PPROACHES T O , FASD I N T H E CRI MINA L JUS TI CE SYSTEM AN D A DE Q U ACY OF RE HA BIL IT ATI O N RES PONSES Comment from Parent ' D' I think it's the Western Australia's Court System that has implemented support people who assist young adults who come before the Justice system.

.... and that they have cards that states they have FASD .. .. ... it would be a fantastic outcome if this was across all states.

Commonwealth law.
Commonwealth law.

Russe ll Fami ly Fetal Alcohol Disorders Association [rffad a] I M 0412 550 540 I E elizabeth@rffada.org I W rffada .org I ABN 675309632 Page 13 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 55 Comme n t f r om D r 'A' Rehabilitation is based in cognitive behavioural approaches - thought, action, consequences.
Does not equate with poor memory, linking ideas, transitions across settings, Plus, FASO has that unique characteristic [a generalisation] of social friendliness, the desire to please, to gain friends.

Accepting this premise, there is a predisposition for agreement, acquiescence even.

Brain injury, lower education attainment, alienation, difficulty separating friendships or accountable / responsible others.

Comme n t f r om P are n t 'E' My son went to prison.
Legal Aid didn't believe FASO was such a big thing.

She said that if it really was a disability the government would acknowledge it as such.

She didn't provide the court with anything to mitigate his sentence, so he went to prison for a crime that is very common amongst people with FASO and learnt nothing.

He came out traumatised beyond belief and has had PTSO ever since.
Whatever the cost of crime, his court case and incarceration and in particular the contact with the uninformed Legal Aid Solicitor, has increased the lifetime cost for the government.

Before his psychiatric issues and his psychoses, he could have made it in society with just the support of his family.

Now he is accessing the NOIS and will require high level support for the remainder of his life.
Yes, he needed to have some sort of punishment for his crime, but could there have been anything else that might have worked?
ACCESS , AVA IL AB I LI T Y A N D AD EQUACY O F FASD SU P PORT AVA I L AB L E T HROUGH THE NAT I ONAL D I SAB I L IT Y I NSURANCE SCHEM E I NC L UD I NG ACCESS T O E F FE CTI VE AN D EARLY I N T E RVENT I ON SERVICES FOR I ND I VIDUALS D I AGNOSED W I TH FASD Point 1: The NOIS is struggling o be sustainable Point 2: The prevalence of FASO in Australia will be found to be at least five percent Point 3: FASO is preventable Point 4: It makes se nse to reduce the numbers of children born with FASO to reduce future demand on the NOIS A National Television Education Campaign will inform not only parents and parents to be, but teachers, doctors, allied health and soc ial workers, of the importance of raising awareness of the dangers of alcohol in pregnancy and the importance of planning their pregnancies in their own client groups and identifying FASO in patients.
Elizabeth [Anne] Russell Supports for the more severe end of FASD are adequately supported by the NDIS however it's the people who have FASD and an average IQ that are not effectively supported by the NDIS .

related anything to max11111se Greater supp01i for students in the their classroom success and support their socia l integration .

Funding is vi1tually non-existent and NDIS wont to support educational needs .
Introduction of training for teachers so they have a frame of reference for when they encounter students with F ASD.

We definitely need a public awareness campaign to prevent thi s disorder plus an education program enforcement law officers.
for Russell Family Fetal Alcohol Disorders Association lrffada] I M 0412 550 540 I E elizabeth@rffada.org I W rffada.org I ABN 675309632 Page 14 Parent L Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 55 They require a Case Manager to help them with all aspects of their life - someone who will not just sit back and wait for the participant to ring but who will proactively seek to identify potential stumbling blocks before they land in the lap of the participant.
They will need to be the liaison between the participant and the Public Trustee or therapists, medical practitioners, psychiatrists or other professionals/organisations.

A Support Coordinator would fill that gap however it may not be something that the NDIS would consider.

The participant would have to be Intensive and perhaps a Support Coordinator, for some, might be the only support required in certain Plans.
SU PPOR T FOR AD UL TS W IT H FASO A N D FOR PAREN T S A N D CARERS OF C H IL DR EN W IT H FASO Where can I read more information on thi s Inquiry?

I am still waiting on NDIS just so my son can be employed by the local centre and be supported enough to hold a job and feel like an included member of society.

He has tried so hard to be employed and it doesn't work.

He ' s given up.

NOW I hear of Scott MoITison ' s plan to steal NDIS funding for his drought relief I don't know what will happen to my son .
When discussing pregnant women and alcohol consumption the most appropriate language is that which takes the blame from pregnant women and places it on alcohol.

For example, language which states, 'When a pregnant woman consumes alcohol', places a measure of blame on the pregnant woman.
If we use language which focuses the listener or reader on the alcohol, 'when alcohol is consumed while pregnant', we will have more acceptance of the fact that mothers and fathers are not to be blamed or shamed should they deliver a child or children with FASO .

A r e t h e r e a ny su gges t i o n s from yo u r n et wo rk o f h e a lt h an d a ll ied h eal t h p r o f essiona ls t o he l p a n adu lt wi t h FASO w h o r ef us e s a ll su pports , med i cat i o n, N DIS an d med i cal advice?
■ ■ In home therapy works for us.

You have to see it as a long game.

Unless one has conservatorship to force things, the person must be willing to engage the help or it's a waste of everyone 's time.

We have found, as painful as it is, that we have had to step back and allow him to hit his own consequences from the outside.

It has taken years, but now the fight is not with us.

We are not blamed as often for things.

For example, he lost his driver's license.


We did not rescue him, when he kept getting tickets.

We did not front the money to pay them.

Some important inclusions - like supp011ing adults with FASO .

Parent B We did not go to court with him to fight them because he was guilty.

It was his problem.

It was inconvenient for us that he could not drive.

However, he got his license back a year later, and he now has some sense of what he needs to do to keep it.
Recently we were talking about how hard it is for him to keep order in his space.

He Russell Family Fetal Alcohol Disorders Association [rffada] [ M 0412 550 540 I E elizabeth@rffada.org I W rffada.org I ABN 675309632 Page 15 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 55 said you are mad about my disability.

I said not at all.

I am mad that you refuse help for your disability.

That you have control over.

He then accepted help.


It's been years.

• We had to as well with three.

At 3 7 my son is finally getting stability after years of having to be on his walk-about of failures.

My daughter is finally at peace with her inability to do life and live up to the expectations they thought she could do.

She died of medical needs from FAS.

My daughter's death woke up her older brother to get stable.

■ The adage you can lead a horse to water ... etc is extremely apt here.
After 30 years of trying to help my family, one sister in particular, my help has only enabled her dysfunctional behaviour.

This is a personal experience.

Professionally you and I spoke about something like this a couple of years ago.

What we learn from an evidence based viewpoint is that it is said that for therapy to work engagement is 80% of the cure [Duncan, Miller and Sparks].

A client can go to all the appointments in the world, but true engagement is leaving the appointment committed to change.
Those who won't go in the first place are in the pre-contemplative stage of change .... going is contemplative and committing to action is the action phase.

They need to believe in a few things: 1.

Change is needed 2.

Change is beneficial and 3.

Change is long lasting Maybe their experience proves the effort makes no difference or they have no problem.

Either way they alone make it work the rest of us educate and support that change.
• Just be there to pick up pieces How do pa r e n ts an d careg i ve r s o f chi l d r en w it h FASO ma n age t h e ir ow n me n ta l h ea l t h a n d st res s l eve l s?

• An ever evolving, changing thing .. .

I use essential oils and supplements to help my mood and resilience and at the moment really trying to connect to my body which is often racked with pain and contraction {I do it with yoga} as I'm feeling the tension, grief, worry, frustration etc trapped in every fibre ...
Reaching out for a virtual hug when it gets too heavy ... • • I chain smoke, which of course does not help one bit and creates a horrendous financial burden bringing even more stress.

I've been stuck in the carers stress merry go-round for a while now as a single parent I make time just for me and for myself and my husband.
'Me' time is usually spent studying [an added stress at exam/assignment time but otherwise great}, reading trashy fantasy novels or staring off into the bush [yay for being a horse Mum as I get Russel l Family Fetal Alcohol Disorders Association [rffada] [ M 0412 550 540 [ E elizabeth@rffada.org [ W rffada .org [ ABN 675309632 Page 16 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 55 plenty of time waiting in lovely surroundings].
Husband time is often spent gaming [computer games] as we were both competitive gamers pre-kids and we still share a love of blowing off steam by killing pixelated dragons lo/.

• ■ It is difficult because although I'd love a day or weekend away, Miss Ten really would be disturbed by that and the fallout would be horrendous.

I drink tea, way too much teal I joined a gym and try and get there three times a week .. .

Sometimes not successfully ...

I talk to my chickens, dogs, cat and Guinea Pigs.


I have also said NO to things lately that I just can't fit in .

• When I get the chance, !

like to park at the water with a coffee.

Wind the windows down .

Turn off the phone.

Turn off the radio.

Talk to no one.

See no one.

Just watch the water ■ Pray .... a/ot • This is also what I do.

Really helps me refocus and calm down .

Also reading, anything easy and not too deep .

Use my alone time not just to get organised but to do nothing or sleep.
Anecdotal evidence suggests that in their efforts to avoid causing anxiety or guilt, many physician s counsel "moderation" thus giving mixed messages about alcohol.

The prudent approach, given what is now scientifically known about alcohol's fetal impacts, must surely be to recommend no alcohol is consumed when pregnant for babies to have as healthy a start to life as possible.
The rffada has had cause to change the wording of much of the information written about alcohol and pregnancy before on-forwarding or incorporating it in presentations or documents because wording is very important.
For instance, in many research and other articles and documents it is said, 'When women drink alcohol while pregnant, they are in danger of damaging their unborn baby' when we could equally accurately say, 'When alcohol is consumed while pregnant it is possible that it can damage the fetus [or 'baby']'.

It is just as easy to say but it takes the blame away from the mother.
This is a key issue when med ia education begins and the rffada recommends that a parent advocate is on any committee or steering group related to education, advertising or media statements.
Russell Family Fetal Alcohol Disorders Association [rffada] [ M 0412 550 540 I E elizabeth@rffada .org I W rffada.org I ABN 675309632 Page 17 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 55 Real suppo1i for parents and cc1refsn going tra111111g for all staff in day cares.

from those who have Ii\ eel ait addndcrgartcns.

schools .

All staff in child safety / understand it - NOT from people whfmster agencies.

Support under NDIS for FASO.


say they krnm about it when its cleaiducation for women in remo te communities and the wider community on effects of drinking they have no clue.

Parent&1ring pregnancy.

Al l medical staff, police, lawyers need to ha\ e a solid understanding of FASO .

Programs in schoo ls that are actually set up for children with FASO .
In the same manner as sexual abuse, domestic violence and other previously 'hushed up' conditions, we need to identify and use the correct language at the start so that it will be understood and used in time by the general public.

As an active presenter on this topic I have had many queries relating to blame and shame and understand that not only do we need to offer education about alcohol and pregnancy and FASD, but also educate on the most inoffensive terminology to use.
The public needs to be encouraged towards the understanding that there are always reasons alcohol is consumed during pregnancy and only rarely is it deliberate.

Even in cases of purposeful abortion it must be understood that the internal and external circumstances for the mother must be unbearable.

Real support for parents and Carers from those that have lived it and understand it.
Like Reply 22h Parent S Without the change in terminology occurring it is possible that women will not 'come out' and freely discuss this condition and it is crucial that as many women as possible do so.

Hundreds of books, tens of thousands of research [projects] and scholarly articles and untold public health reports have been generated in the last thirty years.
Yet one voice has been mostly silent, the voice of the birth mothers themselves 1 More support services/training for allied health sen ices to suppoti kids with F ASD so \•VC don't have to hear any more about ' sticker charts' .

Parent C' W h at a r e so m e sug ges t i o n s fo r p ar e nts w h o h ave a yo u ng g i r l w h o h as ju st sta r t e d me n st r u at i ng a n d ca n ' t m a n age h e r p eri od s, d i sposal an d hyg i ene?
• Many people I know put their daughters on hormonal birth control so that the girls don't get a period at all.

• I work in the DD field .. and that's what we do ... have them put on Depa shot .... or whatever the doctor suggests • My GP said she wouldn't give anyone under 25 the depo shot.

We use either Modibodi period knickers or the ones from Woolworths- Luna knickers.

Three years on we are good for the most part.


Clothes get given to me to soak if needed but sometimes we forget to put used pad in the bin.

Might end up on her dressing table.


Russell Family Fetal Alcohol Disorders Association [rffada ] I M 0412 550 540 I E elizabeth@rffada.org I W rffada .org I ABN 675309632 Page 18 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 55 • The Depa is great for her but because she has been on it for two years, she needs to have a bone density test to make sure all is well.
Our daughter with FASO who is 11 has told me straight that periods are not an option and I can 1stick them up my arse'.

She even asked her friends to stand on her chest to see if they could flatten her chest again .

Fun times ahead fol • Hi, my daughter started her period in April this year and she is eleven.

She has no problem changing at school she uses morning tea and lunch times to help her remember.

I also brought a small material pencil case to put pads in and spare knickers.
I did a lot of practice with panty liners beforehand.

• Modibodi period underwear helps with our 13-year-o/d.

• Mobibodi is great for anyone with or without special needs.

I've heard it recommended on a few sites.

• Modibodi should last the day for a young girl till she gets home from school and can be helped by her parents.
• • I did a You Tube video on having FASO and going through menstruation if you want I can share the link, it's aimed slightly more towards parents https://youtu.be/Sz1381q0HEQ I have a thirteen-year-old with the same issues.

Au t istic and an IQ of 54 with FASO.

She thought she was dying.

We are putting her on birth control.

What happened Inquiry?

What happened recommendaticms?


to the previous the to Parent D AN Y OTHER RELA T ED M ATT ERS Wha t ar e t he mos t im p o r t a nt f acto r s fo r p ar e nts a n d ca r eg i ve r s?

• • • Prevention - a national campaign on television; FASO can never be considered in isolation - it is across just about every department and system; mandatory training for teachers and other professionals likely to come into contact with people with FASO; and mainstream population-based prevalence research.
Training for Child Safety CSO1 CSSO, the investigations team.

Huge public awareness campaign.

Education for EC teachers, childcare workers, early intervention workers and all teachers thereafter.

it's so ridiculous that this isn't already happening.
It's like I'm the one to have to educate the caseworkers, early intervention professionals and educators • Totally agree with all the above ....... Child Safety really need education in this area Russell Fam ily Fetal Alcohol Disorders Association [rffada] I M 0412 550 540 I E elizabeth@rffada .org I W rffada.org I ABN 675309632 Page 19 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 55 • Compassion as part of the media campaign; my understanding is that women with FASO bubs are often from trauma backgrounds or have FASO themselves.
• • I agree.

Definitely no blame and shame for mothers.

Just education to hopefully reduce further babies being impacted.

So true and an important component of the campaign.

To be sure of the most appropriate message there must be consumer input.

I can remember how I felt when I first found out I had physically harmed my boys.

It's a very difficult time for a mother and father.

• Removing the stigma and feelings of shame so bio mothers can seek help for their child.
As an adult with FASO, I've only had the freedom to talk about my FASO since my mother passed away, she made me swear to never tell a soul • • • Definitely professionals being better informed.

I took my [undiagnosed partner] to a hospital setting rehab centre and they pretty much swept it under the carpet, he was asked to leave.

Better knowledge in addiction treatment centres.

Here in Victoria there is limited access to assessments for adults, only way is genetic testing or going interstate.
There was a social worker who was prepared to help us, but we were on the wrong side of child protection for their help.

Also, mandatory assessments in newborns.

I see family having babies, drinking and the babies being born with FASO related issues but not being tested.

I feel those kids will grow up with a life like my partner.

This is probably more to do with stamping out shame and stigma so people will admit and want child tested.

Let's congratulate mum for making it this far through life.
Trauma is at the root of addiction and destructive behaviours; so, treating the trauma and caring for mums is necessary!

I struggle with the fact that my partner has now slipped through the cracks and the services that have an opportunity to support him actually traumatise him further.

I see a family of generations effected one way or another by alcoholism, I just want it to stop.

I am so appalled by the lack of support and understanding of FASO that I am thinking of running for council.
The ignorance and lack of knowledge I have seen is with the GP [he really did his best] who referred us to psychiatrist who after a 55 min session, declared there were no disorders, to the lawyer who brushed it off to the psychologist she referred him to who has done nothing but refer him to a rehab where the psychiatrist said don't worry about your mother whole you are here, the rehab he was asked to leave.

It is really bugging me that the professionals don't even realise how much they don't know.
• Stigma has to go!

Increase welfare benefits so mum has her own home ... stable housing is linked to a reduction in subsequent FASO births.
Surround mum with Russell Family Fetal Alcohol Disorders Association l rffada ] I M 04 12 550 540 I E elizabeth@rffada.org I W rffada.org I ABN 675309632 Page 20 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 55 support and focus on giving bub early intervention to offset learning difficulties as much as possible before Kindy is even a thought ... • Awareness, education, diagnosis facility, acceptance • I think our government doesn't want to know the prevalence rate.
I believe it is> 10% but that will not be validated any time soon.

• Nope, because then governments would have to fund changes at schools and in communities to support folks with a diagnosed brain injury.

Educational Assistants are extraordinary people; I am a teacher but have learned more about special education from EAs than uni ... you can be someone's 1external brain' without taking away a young person's sense of self-efficacy and joy in a job well done.
There is dignity in work and getting youngsters ready for the right workplace is something well worth investing in .

More funding for EAs, more education for teachers, community and employers and more funding for NOIS workers to support folks in the workplace!

• National health campaign.

Health professionals being better informed.

More support.

Education of the risks for students from a young age.

• Training for teachers would be great.


I'd love to see FASO specific support classes in schools in the same way there are ASO support classes.

The ASO support class has been a godsend for our son but we still have to explain FASO to the teachers.
• FASO trained Mental Health, schools, CPS and law enforcement • Comprehensive screening/assessment of all kids in care, same for any child who is suspended or expelled in prep or year 1, compulsory training for teachers, CP and mental health workers, supported accommodation options .... CO M C L US I ON: Parents and caregivers of children with FASO have been struggling for decades to have a voice in the FASO world of Australia .
It was only because there were two parents at the FASO Collaboration at Telethon Kids that the support of parents and caregivers even made it tenth on a list of ten important topics to be tackled next.

This is not acceptable.

Support of parents and caregivers shou ld be high on the list with prevention and the support of people with FASO.

It's clear that only other parents can understand the impact of FASO on the family and the huge financial, emotional, and psychological burden that parents experience .
This stress is · primarily related to lack of support from providers, teachers and the staff in programs which exclude people with FASO because they look and talk as though they are neurotypical.
Russell Family Fetal Alcohol Disorders Association [rffada] I M 0412 550 540 I E elizabeth@rffada.org I W rffada .org I ABN 675309632 Page 21 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 55 In the past, we have been asked for our opinion and ideas, but it seemed this was merely a process and related to the obligations handed down by the relevant funding body.
What we need is to be able to assist in the design of the program not just be recorded on the application.

R E COM M END A TI ONS : l. Professionals - doctors and other professionals such as lawyers, magistrates, police, allied health, teachers and psychiatrists, social workers, case workers, child protection, foster carers and foster organisations must have professional development in FASD to help understand the behaviour of affected patients/clients.

2.
2.

Criminal Justice System - police and other members of the criminal justice system must have professional development in the identification and support and understand the programs appropriate for people with FASD - ideally specialist care through youth justice wou ld diagnose all young people at risk for FASD.

3.
3.

Education Department Policy - the Education Department of each state/territory must acknowledge FASD and establish ways to incorporate the different teaching and learning requirements of children with FASD - there must also be mandatory, regular training for teachers 4.

Parent/child support - parent support grouP?/parents helping parents at the location of diagnostic clinics.

5.
Parent Key Worker- attached to every diagnostic clinic and funded by the clinic-this position would be held by a parent guide/navigator and would provide support and services to families as they are diagnosed- support would take the form of coaching in interventions and accommodations for the child to prevent secondary disabilities, explaining possible reasons for variou s behaviours, mentoring the parents as they go through the NDIS process as th ey may not yet be aware of the future needs of their chi ld , liaison with schools, employers, medical professionals and others, linking with parent support groups and support with referral options and advocacy.
6.

Acknowledge FASO as a disability- the Federal Government must now officially acknowledge that FASD is a disability as this has caused some professionals to question the validity of FASD as a disability.

7.

Consistent prevention message- the rffada has prepared a video which can be used in any prevention message by anyone without cost.

It can be found at https ://youtu be/18 M MczOntyM 8.
Include FASO in any drug and alcohol and mental-health plan - the current national mental-health plan does not mention FASD.

9.
9.

Population based prevalence rate Russell Family Fetal Alcohol Disorders Association [rffada] I M 0412 550 540 I E elizabeth@rffada.org I W rffada.org I ABN 675309632 Page 22 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 55 T he A u s t ra l ia n p o pul a ti o n must be aw a r e t h at : l. Even the smallest amount of alcohol can cause changes in the fetus at a cellular level.

7 2.
7 2.

It is critical that pregnancies are planned and from the time that planning begins no alcohol or other drugs are consumed by either mother or father.

3.
Alcohol is a known teratogen - a substance that causes birth defects - teratogens have four effects : o death - including still birth, spontaneous abortion, miscarriage, and death shortly o after birth because the baby is malformed internally severe ma/formation - heart defects, cleft-lip and palate, hip displacement, heart, kidneys, skeleton o growth deficiency- smaller, with abnormal development o functional deficits - caused by brain disruption, which is the main source of the damage, and one that cannot be corrected 8 4.
How alcohol causes damage in the developing fetus : o excessive cell death - normally cells grow and die in the developing brain, but o alcohol causes excessive cell death impaired cell proliferation - alcohol interferes with normal cell development, which includes growth and division o disruption of cell migration pattern - alcohol causes errors to occur in brain development so that a cell that has a particular place to go in the brain may migrate to the wrong location inhibited nerve growth - alcohol disrupts the neurotransmitters so messages are unable to get from one area to another9 o 5.
Alcohol in pregnancy is the cause of FASO but other factors can determine severity: o Mother's nutrition o Mother's weight and height o Genetic/epigenetic factors o Other licit and illicit drug use o Stress during pregnancy o The environment - domestic violence, poverty, social pressures, homelessness, family violence Lack of education - about the consequences of alcohol in pregnancy o o Parity - the number of children to which the mother has given birth o Gravidity - the number of times a woman has been pregnant 7 http://www.ingenuity.com/science/featured-researchers/fetal-alcohol-study-ipa -finds- signal-noise accessed on 8th December 2014 8 http://en .wikipedia .org/wiki/Teratology accessed on 28th February 2015 9 http://come-over.to/FAS/StreissguthPreventFAS.htm accessed on 9th December 2014 Russell Family Fetal Alcohol Disorders Association [rffada] I M 0412 550 540 I E elizabeth@rffada.org I W rffada.org I ABN 675309632 Page 23 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 55 o The father - if he has consumed alcohol or other drugs at the time of conception 6.
FASO is on a spectrum and 'red flags' include: o Small stature and 'elfin' face o Challenging behaviours - that don't change regardless of consequences - rewards or punishment o Difficulty linking cause and effect o Trouble learning from mistakes o Unable to manage multiple instructions or multi-step instructions o Hearing problems o Difficulty understanding metaphor or idiom o Difficulty transferring or generalising learning o Attention deficits o Hyperactivity o Already diagnosed with ADHD or other 'alphabet soup' type diagnoses o Anxiety T he NH MR C g u ide l i n es f o r a l co h o l use i n p r egna n cy a r e: A.
For women who are pregnant or planning a pregnancy, not drinking is the safest option B.

For women who are breastfeeding, not drinking is the safest option We need to go one step further now.

We need to include men in these gu idelines .


A further point should read : C. For men who are planning a pregnancy, not drinking is the safest option until after conception If this message is shown throughout Australia at every opportunity, we may not have to rely on the courage of waiters and bar attendants to remind pregnant women that alcohol is harmful to their unborn child .

It's not appropriate for people in these occupations to do this.
It is more approp riate for our government to raise awareness in a more appropriate way.

Even so, where others see it as interfering in a mother's life, I see the refusal to sell alcohol to a pregnant woman as courageous.

Mothers and fathers who feel anger instead of gratitude still don't really understand the terrible damage that prenatal alcohol exposure can cause.

Funding for FASO must ALWAYS be allocated to organisations with direct connections to parents and caregivers.
It should be a requirement of every contract that a Memorandum of Understanding [MOU] is developed between parents I parent organi sations and the primary funding recipient.

It's important that is not just about having the MOU signed, but for parents to have an ongoing relationship with the organisation and the project until its completion .
0412 550 540 I E elizabeth@rffada.org I W rffada.org I ABN 675309632 Page 24 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 55 Elizabeth [Anne] Russell Russell Family Fetal Alcohol Disorders Association [rffada] 9.12.2019 Russell Family Fetal Alcohol Disorders Association [rffada] I M 0412 550 540 I E elizabeth@rffada.org I W rffada.org I ABN 675309632 Page 25 Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum DisorderSubmission 55