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FASD in the news

Below you will find the latest national and international FASD news, research and upcoming events. If you have some FASD news or upcoming events that you would like us to share with our readers please Contact Us.

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2018

14-June-2018 – Unravelling the myths of Fetal Alcohol Spectrum Disorder

Western Australia, 6.30pm Thursday 19th July 2018

Join clinical neuropsychologist Associate Professor Carmela Pestell as she sheds light on the hidden epidemic of FASD, why an accurate diagnosis of this complex condition is vital and how sufferers – both children and adults – can be helped to have a better future.
Date: Thursday 19th July 2018
Time: 6.30pm – 7.30pm (doors open at 6.00pm)
Venue: The Auditorium at The University Club of Western Australia
Address: Hackett Entrance #1, Hackett Drive, Crawley WA 6009

For more information and to register click here

12-June-2018 – 8th International Conference on Fetal Alcohol Spectrum Disorder

Vancouver, March 6-9, 2019

Research, Results and Relevance: Integrating Research, Policy and Promising Practice Around the World

This advanced level conference/meeting continues to bring together global experts from multiple disciplines to share international research. From the pure science, to prevention, diagnosis and intervention across the lifespan, the conference will address the implications of this research and promote scientific/community collaboration.

Click here for more information

5-June-2018 – Are you the carer of a child with FASD?

Are you the carer of a child with FASD?  If so, researchers at the University of Queensland Child Health Research Centre are doing a study to assess health and well-being of children with fetal alcohol spectrum disorder (FASD). They are looking to gather information from Australian caregivers who have children with FASD (aged 5-18 years).

The study hopes to fill in the gaps and learn more about how Australian children have been impacted by prenatal alcohol exposure and the stressors that caregivers and families are facing.  Ultimately this will help to develop interventions to improve the health and well-being of individuals with FASD and their families.

Click here for more information

 

14-Apr-2018 – The 2nd Australasian FASD Conference

The 2nd Australasian FASD Conference will be held in Perth on 21-22 November 2018.

It is important that families living with FASD know this conference is designed to benefit those with FASD, those with lived experienced, family support services, clinical professionals and researchers.

If you are interested in FASD – there is something for you at this conference!

Traditional conference abstract lodgement has been called for, however there is also scope to submit ideas and information in non-traditional ways. This could take the form of photos, videos, stories, posters and other ideas.

For example, you may care for a child with a talent for photography and a gallery of photos could provide insight and illumination into the world of that child. Such displays gives others a unique perspective and understanding. You may have designed, or come across, strategies, posters, charts, or tips which may be useful for others.

This is the forum to share these ideas and many others, click here to submit fasdconference.com/abstract-submission/.

If you need help, or have any questions about submissions please contact FASD2018@telethonkids.org.au

Closing date for submissions is the 11th of May 2018.

9-Mar-2018 – New FASD Clinic

The Gold Coast Clinic is opening a new clinic for young children aimed at diagnosing children from 3-7 years of age. They are operating this with their usual team and also help from Griffith University.  The referral criteria are the same – a history of prenatal alcohol exposure plus developmental or behavioural concerns. Referrals can go through Tanya on CDSGoldCoast@health.qld.gov.au or by phone on 56879183.

16-Mar-2018 – Are you making any of these NDIS mistakes?

There’s a saying that ‘smart people learn from their mistakes, but really smart people learn from the mistakes of others’.

We’ve identified some of the common mistakes people make when it comes to preparing for the NDIS and put them in to this blog, so others don’t make them too. Click here

08-Mar-2018 – Survey – the way the law responds to people who behave in different ways

Professor Karpin and Dr O’Connell are both academics at the Faculty of Law, University of Technology, Sydney (UTS). They are researching the way that the law responds to people who behave in ways that are viewed by some members of society as challenging, different or difficult. We are talking to a range of people and are particularly interested in hearing about the lived experiences and thoughts of people with disability and their associates. As part of our research we have prepared two online surveys; one for people with disability and one for their associates. Both surveys are approximately 30 minutes long and are focused on how the law affects people one a day to day basis. You can find copies of the surveys (including the Participant Information Sheet and Consent Form) by clinking on the following links: https://www.surveymonkey.com/r/bioinequalities1 and https://www.surveymonkey.com/r/bioinequalities2. This research will allow us to consider whether the laws we have are working or whether they need to be changed. We will look at laws that have the effect of protecting or excluding people with disabilities and make suggestions about how they could be improved. Please don’t hesitate to contact us if you would like more information. Professor Karpin can be contacted on 02 9514 3179 or at Isabel.Karpin@uts.edu.au, and Dr O’Connell can be contacted on 02 9514 8079 or at Karen.OConnell@uts.edu.au

02-Mar-2018 – Adult and child diagnosis of FASD

Better Life Centre provides services to assist in the diagnosis and support of people with Fetal Alcohol Spectrum Disorders (FASD). Using a team which may consist of a Paediatrician, Clinical, Educational and Developmental psychologists and Neuropsychologists our allied health professionals help to make the diagnosis process as simple as possible. Adherence to Australian Guidelines, our team upholds national standards in health care. The practitioners help with both child and adult diagnosis, while providing the framework for future support.

Better Life Centre

P: 07 3353 5430 | F: 07 3839 0966 | W: www.betterlifecentre.com.au | E: admin@betterlife.com.au |

14-Feb-2018 – prevalence of FASD in youth detention

Here is the link to the published paper on prevalence of FASD in youth detention

http://bmjopen.bmj.com/content/bmjopen/8/2/e019605.full.pdf?ct=

01-Feb-2018 – 28 FASD Facts for Health Professionals

  1. Alcohol is a teratogen that readily crosses the placenta and damages the central nervous system and other organs and may impair prenatal and postnatal growth (Fitzpatrick & Pestell, 2016)
  2. When a mother consumes alcohol during pregnancy, the blood alcohol of the fetus is the same or higher than the mothers (Bower & Elliott, 2016)
  3. In the absence of facial dysmorphology, FASD is commonly underdiagnosed and mis-diagnosed as Autism Spectrum Disorder, Attention Deficit Hyperactivity Disorder and Conduct Disorder (Stevens, S., Nash, Koren, & Rove, 2013).
  4. Only 41% of allied health and medical professionals are confident in asking about alcohol use during pregnancy which contributes to the under-diagnosis of FASD (Payne, Elliott, Bower et al., 2005).
  5. FASD is recognised as the leading preventable cause of birth defects and developmental and learning disability worldwide (Mather, Wiles & O’Brien, 2015).
  6. 92% of individuals living with FASD will have a co-occurring mental illness, with depression and suicidal ideation being the most common (Thanh & Jonsson, 2016)
  7. 50% of Australian women will experience an unplanned pregnancy, leaving the chance of alcohol exposed pregnancies very high (Australian Medical Association, 2016)
  8. The ‘spectrum’ of birth defects is due to the quantity of alcohol consumed, how frequently it was consumed and the timing during the gestation of the pregnancy it was consumed (May & Gossage, 2011).
  9. Rates of alcohol use, binge drinking and drinking during pregnancy are increasing in young Australian women (Elliott, Payne, Morris, Haan & Bower, 2008).
  10. The National Health and Medical Research Council and World Health Organisation advise to abstain from drinking alcohol during pregnancy and breastfeeding (NHRMC, 2009; World Health Organization, 2014)
  11. The 3 sentinel facial features for FASD (thin upper lip, smooth philtrum, short palpebral fissure length) are specific to alcohol exposure and do not vary by race, age or gender (Moore et al., 2007).
  12. Women have articulated that peer pressure & not wanting others to know they are pregnant, insufficient education and the enjoyment of alcohol as reasons they felt giving up alcohol during pregnancy would be hard (Tsang & Elliott, 2017).
  13. Life expectancy at birth for people with FAS is 34 years old with the leading cause of death being suicide (Thank & Jonsson, 2016).
  14. 83% of individuals living with FASD do not display facial features (Aros., et al, 2012)
  15. 1/3 women are unaware of the dangerous effects alcohol has on a developing fetus (Paedon, Payne, Bower, Elliott et al., 2008)
  16. Problems that emerge in childhood do not disappear with age, but rather form the development of additional and possibly more severe disorders later in life (Pei, Denys, Hughs & Rasmussen, 2011)
  17. The risk of developing early onset (13-17 years) alcohol abuse disorder was two times higher in those exposed to 3 or more standard drinks in early pregnancy (Alati et al., 2006)
  18. Facial dysmorphology only occurs when alcohol is consumed during the first trimester (Feldman et al., 2012)
  19. 81% of individuals living with FASD will have a language disorder (Popova et al., 2016)
  20. Children living with FASD are three times more likely to experience gross motor impairment than those without FASD. The most common gross motor deficits children experience is balance, coordination and ball skills (Lucas et al., 2014)
  21. FASD occurs in all cross-sections of society, wherever there is alcohol there is FASD (Fitzpatrick & Pestell, 2016).
  22. High socio-economic status is a strong predictor for alcohol use (McCormack, Hutchinson, Burns, Wilson, Elliott, Allsop, Najman, Jacobs, Rossen, Olsson & Mattick, 2017).
  23. There is no threshold for prenatal alcohol exposure required for diagnosis of FASD (Bower & Elliott, 2016)
  24. 1 in 4 pregnant women continue drinking during pregnancy, & of these, 96% report drinking 1 or 2 standard drinks (defined as 10g of ethanol) in a typical drinking session (2013 National Drug Strategy Household Survey, 2014)
  25. 61% of pregnant women drank between conception and pregnancy recognition. Binge and heavy drinking the most common (McCormack, Hutchinson, Burns, Wilson, Elliott, Allsop, Najman, Jacobs, Rossen, Olsson & Mattick, 2017)
  26. Global prevalence is conservatively estimated at 7.7 per 1000 population (95% CI, 4.9-11.7 per 1000 population) and is much higher in populations with risky levels of drinking (Lange, Probst, Gmel, Rehm, Burd & Popova, 2017).
  27. Without intervention individuals living with FASD risk developing secondary issues such as school failure, addictions, mental health disorders, dependent living, unemployment, homelessness & incarceration (Popova et al., 2016).
  28. 1/3 women binge drank during their pregnancy on a ‘special occasion’ (Muggli et al., 2016)

03-Jan-2018 – Invitation to a FASD Eyebites Cards Webinar

NOFASD Australia and the Ministry of Vulnerable Children Oranga Tamariki of New Zealand invite you to a FASD Eyebites Cards Webinar.

This informal conversational webinar with Rose Hawkins and Anne Heath will showcase the FASD Eyebites Cards, a fantastic resource for practitioner, parents or carers working with those who have lived experience of FASD. These unique cards can assist as an everyday tool to support families and service providers in key FASD-informed principles. They are also useful in times of challenge.

After the Webinar the FASD Eyebites cards can be obtained in the following ways:

  • In New Zealand – via email request for Rose.Hawkins@mvcot.govt.nz A small charge may apply.
  • In Australia – via email request to NOFASD’s online enquires form at www.nofasdaustralia.com/contact-us Only postage and handling fees will be charged.

About the presenters:

Rose Hawkins is the regional disability advisor for the northernmost region of the New Zealand child protection and youth justice organisation, Ministry of Vulnerable Children Oranga Tamariki. Rose realised that much of her work is about support for children, young people and families grappling with the lifelong effects of Fetal Alcohol Spectrum Disorder (FASD). To address this and raise awareness Rose has collaborated with Alcohol Healthwatch and the FASD Centre Aotearoa and developed FASD resources which are “easily digestible” including the FASD Eyebite Cards. Rose’s health and disability career started in physiotherapy, working in diverse clinical areas and management positions across the sector.

Dr Anne Heath has a background in community services (alcohol and drug, youth work, disability, mental health, homelessness). Anne recognised that hidden FASD often underpins many challenges across the community sector and has since contributed to awareness raising and community education across Australia. Anne currently works as the national educator at NOFASD Australia and as a Lecturer at the University of Tasmania.

Date: 31st January 2018

Times:

New Zealand – (NZDT) 4pm

Western Australia – (AWST) 11am

South Australia – (ACDT) 1.30pm

Northern Territory – (ACST) 12.30pm

Queensland – (AEST) 1pm

NSW, Victoria, Tasmania, ACT – (AEDT) 2pm

Charge: No charge to attend webinar.

Registration: https://login.redbackconferencing.com.au/landers/page/272dc2

2017

08-Dec-2017 – Christmas message

Pregnant, planning or could be – no alcohol is the safest choice at Christmas. See this timely reminder from children about what is really important at Christmas.

Click here

05-Dec-2017 – Christmas message

Pregnant, planning or could be – no alcohol is the safest choice at Christmas. See this timely reminder from children about what is really important at Christmas.

Click here

14-Nov-2017 – Make FASD History in Newcastle

M A K E F A S D H I S T O R Y I N N E W C A S T L E

This FASD (Fetal Alcohol Spectrum Disorder) Forum will bring together specialists to share their knowledge and experience of FASD in the Hunter region. It will also be a professional development and awareness raising opportunity for health professionals, educators, service providers, government agencies and community members who are actively encouraged to attend.

Guest speakers include:

PROF ELIZABETH ELLIOTT

Sydney Children’s Hospitals Network (Westmead)

PROF JOHN BOULTON

Emeritus Professor, Faculty of Health and Medicine, Newcastle University

DR JAMES FITZPATRICK

Project lead – Head Alcohol and Pregnancy and FASD Research

Telethon Kids Institute Perth

MAGISTRATE ELLEN SKINNER

Broadmeadow Children’s Court

Newcastle City Hall Banquet Room

5 December 2017

6:00 – 8:00pm

Bookings: events@mercyservices.org.au

RSVP by 24 November

Contact: Project Officer Kerrie Hawkins 0447 048560

Admission free

Light supper provided

There will be an opportunity for

questions and public discussion

06-Nov-2017 – Advocacy support to people with disability

DDWA is increasingly being asked to provide advocacy support to people with disability in the area of education and in particular for people experiencing challenging behaviour.

We are interested to hear about you or your family member’s experience at school.

The survey is for families with a child aged 5-18 with challenging behaviour and difficulties in the school system. If you have more than one child with challenging behaviours, please complete a survey for each child.

The information you provide will assist with:

– getting data on the number of students being fully or partially excluded from school because of their behaviour

– the impact of this exclusion on families

– our systemic advocacy work in promoting changes that enable all children to participate in school, both socially and academically

– our project work in developing workshops and resources for schools to help them to understand and respond to students with very complex needs

This survey should take around 10 minutes – a $50 Coles Myer voucher will be sent to a randomly selected respondent.

All responses will be treated with confidentiality and we do not share any personal details with third parties. All responses will be de-identified before any findings are reported on.

https://www.surveymonkey.com/r/YG8PP9W

Thank you for participating.

Best wishes from the team at DDWA

31-Oct-2017 – Alcohol labelling

On 24 November 2017 Australian and New Zealand Ministers with responsibility for food regulation, known as the Forum on Food Regulation (the forum), will be considering alcohol pregnancy warning labels. We seek your support by writing to the Health and Food Ministers in your state or territory to ask them to immediately commence the process of mandating proper pregnancy warning labels on all alcohol products.

There is a real prospect that Forum members are prepared to end the alcohol industry’s failed and grossly inadequate voluntary consumer information scheme.

We need your help to make this a reality.

Please send the sample letter below and send to your Ministers. (For those in Qld and in view of the just announced State Election and the caretaker status of the Government, we are recommending you write to the Commonwealth Minister, Dr David Gillespie.)

Why this issue is important

  • In 2011, Ministers agreed that alcohol warning labels should be pursued, but allowed the alcohol industry a two year trial period “…to introduce appropriate labelling.”[i] This timeframe was extended in 2014 for another two years.
  • Recent testing (2016) found that the DrinkWise label (‘It is safest not to drink while pregnant’) was misinterpreted by consumers with 38 per cent of those surveyed believing it meant that it was okay to consume alcohol during pregnancy.
  • Alcohol health warning labels promote health messages in ways that other health initiatives do not, at point of sale and at point of consumption.
  • There is a clear regulatory process for food labelling (alcohol is considered a food in this instance) in Australia and New Zealand, this is through Food Standards Australia New Zealand (FSANZ).
  • A labelling standard has not yet been produced, one details the size, location and wording of the label. FSANZ is the only organisation that can do this and needs to be tasked by the Forum to commence the process to implement mandatory alcohol health warning labels.
  • Continued delay and the continued allowance of labels that confuse or are misinterpreted by consumers is dangerous to the health and lives of future generations.

Thank you

TEXT HIGHLIGHTED IN YELLOW ARE PROVIDED AS A GUIDE. PLEASE DELETE BEFORE SUBMITTING.

DATE

The Hon Name Surname[SW1]

Position

Address

SUBURB STATE Postcode

Dear[SW2] Salutation

MANDATORY ALCOHOL PREGNANCY WARNING LABELS

I/we am/are writing about the meeting taking place on 24 November 2017 between Australian and New Zealand Ministers with responsibility for food regulation, known as the Forum on Food Regulation (Forum). I/we ask Forum members to immediately commence the process of mandating proper pregnancy warning labels on all alcohol products.

In 2011 the Forum agreed that alcohol warning labels should be pursued, but allowed the alcohol industry a two year trial period “…to introduce appropriate labelling.”[i] This timeframe was extended in 2014 for another two years.

The alcohol industry’s voluntary trial has clearly failed. Testing of the DrinkWise label (‘It is safest not to drink while pregnant’) in 2016 found that the label was misinterpreted by consumers with 38 per cent of those surveyed believing it meant that it was okay to consume alcohol during pregnancy.[1This is highly dangerous; alcohol is not like other products, it is associated with considerable harm, particularly when consumed during pregnancy. Consumers have a right to be informed about these dangers.

It is time the Ministerial Forum tasked Food Standards Australia and New Zealand to immediately develop a regulatory standard for alcohol product labelling. This includes the standard of wording, consumer testing and application of labels including the size, colour and placement on products.

Further delays will result in more babies being born who have been exposed to alcohol in-utero, many of whom will have Fetal Alcohol Spectrum Disorder (FASD).

INCLUDE INFORMATION HERE ABOUT:

  • YOUR EXPERIENCE/KNOWLEDGE OF FASD
  • HOW YOU BELIEVE CONSUMERS HAVE A RIGHT TO BE INFORMED

OR DELETE THE SECTION HIGHLIGHTED IN YELLOW IF YOU WOULD LIKE IT TO BE A GENERIC SUPPORT LETTER.

ANYTHING ELSE YOU WANT TO ADD

 

Forum on Food Regulation Ministers

WWhen writing to your Minister/s please copy and paste the entire address block and use the salutation provided.

Commonwealth

The Hon Dr David Gillespie MP david.gillespie.mp@aph.gov.au

Assistant Minister for Health

PO Box 6100 Parliament House

CANBERRA ACT 2600

Salutation: Dear Dr Gillespie

The Hon Luke Hartsuyker MP luke.hartsuyker.mp@aph.gov.au

Assistant Minister to the Deputy Prime Minister

PO Box 6100 Parliament House

CANBERRA ACT 2600

Salutation: Dear Mr Hartsuyker

ACT

Ms Meegan Fitzharris MLA

Minister for Health fitzharris@act.gov.au

GPO Box 1020

CANBERRA ACT 2601

Salutation: Ms Fitzharris

NSW

The Hon Niall Blair MLC niall.blair@parliament.nsw.gov.au

Minister for Primary Industries

Level 30
Governor Macquarie Tower
1 Farrer Place

SYDNEY NSW 2000

Salutation: Dear Mr Blair

The Hon Brad Hazzard MP wakehurst@parliament.nsw.gov.au
Minister for Health

Level 31
Governor Macquarie Tower
1 Farrer Place

SYDNEY NSW 2000

Salutation: Dear Mr Hazzard

NT

The Hon Natasha Fyles MLA Minister.fyles@nt.gov.au

Minister for Health

GPO Box 3146

DARWIN NT 0801

Salutation: Dear Ms Fyles

QLD

(Due to the QLD election please send letter to david.gillespie.mp@aph.gov.au

David Gillespie Commonwealth Minister instead)

The Hon Dr David Gillespie MP

Assistant Minister for Health

PO Box 6100 Parliament House

CANBERRA ACT 2600

Salutation: Dear Dr Gillespie

SA

The Hon Peter Malinauskas MLC Minister.Health@health.sa.gov.au

Minister for Health

GPO Box 2555

ADELAIDE SA 5001

Salutation: Dear Mr Malinauskas

The Hon Leon Bignell MP ministerleonbignell@sa.gov.au

Minister for Agriculture, Food and Fisheries

GPO Box 1671

ADELAIDE SA 5001

Salutation: Dear Mr Bignell

TAS

The Hon Michael Ferguson MP michael.ferguson@parliament.tas.gov.au

Minister for Health

PO Box 537

LAUNCESTON TAS 7250

Salutation: Dear Mr Ferguson

Vic

The Hon Jill Hennessy MP minister.health@health.vic.gov.au

Minister for Health

Level 22
50 Lonsdale Street

MELBOURNE VIC 3000

Salutation: Dear Ms Hennessy

The Hon Jaala Pulford MLC jaala.pulford@parliament.vic.gov.au

Minister for Agriculture

Level 16
8 Nicholson Street

EAST MEBOURNE VIC 3002

Salutation: Dear Ms Pulford

WA

The Hon Roger Cook MLA Minister.Cook@dpc.wa.gov.au

Minister for Health

13th Floor
Dumas House

2 Havelock Street

WEST PERTH WA 6005

Salutation: Dear Mr Cook

24-Oct-2017 – Calm room

Jessica Hannan, from NOFASD was the OT clinical consultant at the launch of the Calm Room at Westfield Woden (ACT). Designed to be a safe place for individuals living with sensory processing difficulties to go to when they are shopping. Many families reporting that the overloading sensory environment of a shopping centre can impact on parents, carers and families ability to complete this activity of daily living. Westfield Woden decided to give them some independence back. It is designed to be used for individuals of all ages who find the shopping environment difficult to manage. Sensory processing difficulties don’t just occur with Autism Spectrum Disorder but are also a co-morbidity of many other disorders such as ADHD, FASD, trauma, anxiety and PTSD.

Calm%20Room

02-Oct-2017 – Navigating the NDIS

Navigating the NDIS: a NSW Mental Health Perspective Workshops

Are you a service provider, a person living with a mental health condition, or their family or carer with questions about the NDIS? Are you unsure about how it will affect people accessing mental health services?

With the NDIS being rolled-out state-wide, now is a great time to learn more about how it may affect you. This course will help you maximise the potential of the Scheme to support people to live the life they want.

More information click here

25-Sep-2017 – getting the best” out of the NDIS

Brain Injury Australia thought you might be interested in two workshops on “getting the best” out of the NDIS that we are offering in November.

The first workshop – developed for clinicians, allied health professionals and service providers – will deliver: the key information on the NDIS frameworks, preparation and planning processes; practical tools that can be used in pre-planning and planning work; the necessary elements of effective clinical goal-setting, assessment, planning and evidence-based interventions to support NDIS participants with a brain injury and promote their social role participation; and the skills to navigate the crucial interface between State/ Territory health-funded services and the NDIS.

The second workshop – designed for people with a brain injury, their families, carers and advocates – will provide attendees with: the essential information on the NDIS’ rules and guidelines, and how you can use them in your preparation and planning for the NDIS; the experiences of current NDIS participants with a brain injury; and guidance to commence documenting your current life circumstances and disability services as well as planning for potential NDIS-funded supports to meet goals.

Both workshops will be led by an interdisciplinary team of Professor Barry Willer from the State University of New York at Buffalo, occupational therapist Libby Callaway, Associate Professor Natasha Lannin from La Trobe University, and Sue Sloan – an occupational therapist and clinical neuropsychologist.

The first workshop will be held on Monday November 21st, the second workshop on Tuesday November 22nd, both at Royal Rehab in Ryde, Sydney.

Both workshops’ numbers are strictly limited, so register early.

Click here

20-Sep-2017 – FASD Parent/Carer face to face special interest/support group in South Australia

FASD Parent/Carer face to face special interest/support group in South Australia – Calling for expressions of interest

If you (or anyone you know) would be interested in attending a FASD face-to-face special interest/support group close to Adelaide we would love to hear from you. The group meetings (perhaps bi-monthly or quarterly) will be facilitated by NOFASD founder Sue Miers and we envisage the location being somewhere reasonably central but where car parking is not an issue. Two hour meetings are planned to be held on a weekday sometime between 10.30- 1-30 (light lunch supplied)

Please use our online enquiries form to register your interest and let us know which days of the week and times would work best for you and whether you are likely to have children with you (at this stage child care will not be available).

The closing date for this expression of interest is Friday October 6th We look forward to hearing from you and should you have any queries please don’t hesitate to contact our help-line1300 306 238 (free call)

20-Sep-2017Workshop on the National Disability Insurance Scheme (NDIS)

Brain Injury Australia presents a day-long workshop on the National Disability Insurance Scheme (NDIS) for professionals working with people with a brain injury. The NDIS, which will provide around 460,000 people with disability the “reasonable and necessary supports they need to live an ordinary life” by 2019, radically changes the way people with a brain injury plan for, and receive, services. Delivered by an interdisciplinary team experienced in both the policy and clinical practice application of the NDIS, this workshop will provide registrants with:

  • – the key information on the NDIS frameworks, preparation and planning processes;
  • – practical tools that can be used in pre-planning and planning work;
  • – the necessary elements of effective clinical goal-setting, assessment, planning and evidence-based interventions to support NDIS participants with – a brain injury and promote their social role participation; and
  • – the skills to navigate the crucial interface between State/ Territory health-funded services and the NDIS

MONDAY 20THNOVEMBER 2017 ROYAL REHAB

9:30 am – 4:30 pm 235 Morrison Road, Ryde Sydney

Presenters

BARRY WILLER is Professor of Psychiatry at the State University of New York at Buffalo. He has worked in the field of traumatic brain injury for over 30 years, written three books and 150 peer-reviewed journal articles and book chapters. He is the principle author of the Community Integration Questionnaire and the “Whatever it Takes” model. He was the first director of the Rehabilitation Research and Training Center on Community Integration and was a leader in the development of the Traumatic Brain Injury Model Systems database. He was the 2012 recipient of the Research Award from the North American Brain Injury Society.

LIBBY CALLAWAY Libby Callaway is a registered occupational therapist, having worked for the past 24 years in the field of neurological rehabilitation in both Australia and the United States. Since 1999, Libby has been the director and principal occupational therapist at Neuroskills, a community-based practice providing rehabilitation services to people with neurological disability. Libby has also consulted to the National Disability Insurance Agency during development of their Specialist Disability Accommodation Framework, and worked with current and future National Disability Insurance Scheme (NDIS) participants on pre-planning and NDIS plan implementation. In addition to this clinical work, Libby is a senior lecturer and researcher in the Occupational Therapy department at Monash University, where she leads a national collaborative research program on housing, technology and support design for people with disability.

NATASHA LANNIN is Associate Professor in Occupational Therapy at Alfred Health in Melbourne and La Trobe University, and is Honorary Research Fellow at the John Walsh Institute for Rehabilitation Research, the George Institute for Global Health and the Florey Institute of Neuroscience and Mental Health. Working with the Alfred Health hospital network, she conducts clinical trials investigating the effectiveness of rehabilitation interventions as well as translation research into improving the long-term outcomes for those living with a traumatic brain injury or stroke. She has a keen interest in goal-setting and improving support for people with brain injury and their carers transitioning from hospital to the community

SUE SLOAN is a registered occupational therapist and clinical neuropsychologist. Sue works in private practice providing community-based rehabilitation for people with acquired brain injury. Sue is also Honorary Neuropsychologist in the Austin Health’s Brain Disorders Program providing rehabilitation to people with brain injury and complex mental health co-morbidities. Sue has co-authored three books in the field, published in peer-reviewed journals and frequently presents on aspects of community-based brain injury rehabilitation.

REGISTRATION FORM/ TAX INVOICE

(For GST purposes, this document will act as a tax invoice upon receipt of payment)

THE WORKSHOP’S NUMBERS ARE STRICTLY LIMITED, SO REGISTER EARLY

GETTING THE BEST FROM THE NDIS – WORKSHOP FOR CLINICIANS, ALLIED HEALTH, SERVICE PROVIDERS

Community Centre, Royal Rehab, 235 Morrison Rd, Ryde (entry via Charles Street – see map, below)

Monday 20th November 2017, 9:30 a.m. – 4:30 p.m.

WORKSHOP COST: $180.00 (GST inclusive)

Lunch, morning and afternoon tea will be provided.

(All proceeds from the workshop will support the work of Brain Injury Australia.)

Name: ___________________________________________________________________________________________________

Organisation (if applicable): __________________________________________________________________________________

Position/ occupation: ______________________________________________________________________________________

Postal address: ____________________________________________________________________________________________

E-mail: _______________________________________________ Best contact telephone: _______________________________

Disability access requirements: _______________________________________________________________________________

Special dietary requirements: ________________________________________________________________________________

PAYMENT DETAILS:

(Payment by Electronic Funds Transfer (EFT) is preferred.)

ELECTRONIC FUNDS TRANSFER:

(Note: please enter the initial of your first name and your surname as the payment reference. However, if it is a business/ organisational registration for multiple attendees please enter the name of the business/ organisation as your payment reference.)

BSB: 032 267 Account number: 302 928

Account name: Brain Injury Australia

ABN: 77314074922

BRAIN INJURY AUSTRALIA

is the national peak advocacy organization, the central clearinghouse of information and gateway to nationwide referral for optimising the social and economic participation of the over 700,000 Australians with an acquired brain injury (ABI), their families and carers.

CREDIT CARD PAYMENT:

Provide card details below.

Visa MasterCard

Credit Card No ____ ____ ____ ____ ____ ____ ____ ____

____ ____ ____ ____ ____ ____ ____ ____

Expiry: ____ ____ / ____ ____ CVC: ____ ____ ____

Cardholder Name: _______________________________

Cardholder Signature: ____________________________

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13-Sep-2017 – Alcohol & pregnancy – Have your say!

Fetal Alcohol Spectrum Disorder (FASD) is a lifelong disability caused when babies are exposed to alcohol in the womb. Researchers at Telethon Kids are part of a nation-wide team working to better understand and prevent it.

We need your thoughts on alcohol consumption during pregnancy, and the diagnosis, treatment and support for those affected by FASD.

Just by completing a short survey, you’ll help set priorities for future research. Survey closes on the 19th of September.

To get started visit: Click here

08-Sep-2017 – Press release

The National Organisation for Fetal Alcohol Spectrum Disorders (NOFASD, Australia)

NOFASD Australia is dedicated to reducing the harm caused by alcohol exposed pregnancies and improving lives for those living with FASD.

ARE AUSSIE MALES MAN ENOUGH TO HANDLE PREGNANCY?

On International FASD Awareness Day, Saturday 9 September, the National Organisation for Fetal Alcohol Spectrum Disorder (NOFASD) Australia is challenging all Aussie men and those supporting a mum-to-be to show their manliness: by going belly-up on alcohol to get #pregnanttogether with the expectant mothers in their lives.

Fetal Alcohol Spectrum Disorder (FASD), the result of exposure to alcohol in utero, is the leading known cause of developmental disability believed to affect one percent of the population. To symbolise the nine months of pregnancy, FASD International Awareness Day on 9 September raises awareness of the importance of being completely alcohol free throughout the pregnancy, including if planning to be.

“Alcohol in pregnancy is a community concern, not just a woman’s issue. Everyone can play a part in eradicating FASD and this FASD Awareness Day, we’re asking all partners to show their love for the expectant mother in their lives by taking part in our #pregnanttogether campaign,” says Louise Gray of NOFASD Australia.

“Babies need healthy and supportive fathers too. Dads-to-be can take an active part in a pregnancy by giving up or reducing alcohol and becoming pregnant together with their partners. And if you are thinking about becoming a father, take some time to think about the role of alcohol in your life and in what ways can you make healthier choices for your relationship?”

There is no known safe amount of alcohol which can be consumed during pregnancy and the National Health and Medical Research Council, Australia (NHMRC), the Australian Government Department of Health and other affiliated medical bodies all advise that no alcohol is the safest choice.

NOFASD Australia has some suggestions for those who want to be #pregnanttogether and make a difference:

1.Take a ‘pregnant pause’ – If your partner, friend, sister, co-worker or another woman you know is pregnant, you may want to consider taking a ‘pause’ from drinking – for a month or the entire pregnancy – as a way of showing support.

2.Make it easy to be alcohol-free – When socialising, take the emphasis away from drinking alcoholic beverages in order to support the mum-to-be to make good choices and offer non-alcoholic options if you are a host. Avoid pressuring anyone to drink and make sure that the mum-to-be feels part of the fun whether or not they are drinking alcohol.

3.Start with the man in the mirror – Support a ‘culture of moderation’ by taking a look at your own drinking and working to minimise any harmful effects that your own drinking might have on yourself or pregnant partner.

4.Be compassionate – For some, stopping drinking can be a struggle. Avoid being critical and assume that women are doing the best they can, and let them know that you’re willing to help when they’re ready to make a change. Judgment creates a climate of fear and shame where women can feel discouraged and avoid seeking help to address their problems with alcohol.

There are a number of ways to get behind this #PregnantTogether campaign and raise awareness of NOFASD. Please join our Thunderclap by pledging a social media post to join in the conversation and help spread the FASD message on 9 September. Sign up here: https://www.thunderclap.it/projects/60991-fasd-day-pregnanttogether

In Sydney, on 9 September you can visit the NOFASD Australia stand at Westfield Sydney Central in the Pitt St Mall for a Tea Saloon event or attend a number of local events including and Harvey Local Drug Action Group flash mob in Harvey, Western Australia. For more details, see: http://www.nofasdaustralia.com/community/international-fasd-awareness-day

For more information about NOFASD, visit www.pregnanttogether.org.au and http://www.nofasdaustralia.com

About NOFASD and FASD Awareness Day

NOFASD Australia has a strong commitment to FASD prevention at a primary, secondary and early intervention level. NOFASD Australia is working towards ensuring FASD is recognised as a disability in Australia, promoting social inclusion by advancing the rights and interests of people living with FASD, and providing information, referral and support to individuals and families at a grassroots level. In addition, NOFASD Australia also provides education and training workshops to parent and carer groups, government and non-government service providers and school communities throughout Australia. FASD Awareness Day began in 1999, led by the US based NOFAS, and now takes place around the world, providing opportunities for communities to raise awareness about FASD and share this prevention message across the world.

Media contacts


Louise Gray

Executive Officer

louise@nofasdaustralia.com

+61 417 272 685

0417 272 685

1 300 306 238

05-Sep-2017 – FASD Interventions – There is cause for optimism

Dr. Natasha Reid has recently graduated with a PhD in Clinical Psychology. Her thesis investigated how to improve outcomes for children with FASD. She continues to be involved in FASD research at Griffith University and the Centre for Children’s Health Research in Brisbane.

Dr%20Reid

I was asked to give a presentation recently on the topic of FASD Interventions: What Works? I believe in part; that the title of this presentation was chosen because it is still common for some health professionals to believe that if a person has FASD, there is very little that can actually be done for them. A few years ago, before I came back to university to undertake my PhD I was working in the foster care system and unfortunately that was exactly what I was told.

However, contrary to this misconception, there are fantastic interventions available that have the potential to improve many aspects of life for individuals with FASD. As part of my PhD research I wanted to know what effective interventions were currently available. So, I undertook a systematic review of all the available research at the time. I found 32 different interventions, across a very wide range of areas that I could include in this review (e.g., developmental outcomes in infants, self-regulation and attentional control, socials skills, parenting programs, education and advocacy and support for parents with FASD).

I cannot go into detail about all of these studies here (I have included the reference below for the full details). Several of these interventions are well known such as, the Families Moving Forward Program, The Maths Interactive Learning Experience (MILE) and The Good Buddies Program (i.e. social skills program). These are all excellent examples of evidence-based interventions that can improve different aspects of functioning for children with FASD. Further, the ALERT program, which is a commonly used intervention in Australia, in clinics and in schools has also been found to be helpful for children with FASD. Notably, one of the studies using the ALERT program (Soh et al., 2015) found changes in children’s brains after the intervention. Very exciting stuff! To my knowledge, this is the only study to date that has included pre-post brain scans.

In addition, there have been many more promising intervention studies that have been published more recently. For example, the Families on Track integrated prevention program, which is a combination of Families Moving Forward and the group based PATHS curriculum. Notably, the PATHS curriculum is also an intervention that is used in Australian schools. Further, the GoFAR Program, which is a computer game and behavioural program that focuses on improving self-regulation for children 5 – 10 years. Also, there has recently been a small trial of the Circle of Security with young children (2-5 years) with FASD, which found reductions in parent stress and child behaviour. Again, this is an intervention that is already widely available in Australia that focuses on improving caregiver and child relationships, which may be particularly important for some families.

Consequently, there are a broad range of interventions available. Currently, the majority of these interventions are for school-aged children, although there are more that also include preschool-age children. However, there are still few studies that have included adolescents and adults and this is an important area that needs attention.

Though, where we are currently falling down is in the dissemination of these interventions (i.e., getting them out there to all the people who need them). Although there have been numerous effective intervention studies conducted, we do not have access to all these wonderful interventions in Australia. So, we need to encourage our health and education professionals to work together to get people to come out to Australia to provide training to all of us!

However, there are also a number of interventions that have been mentioned that you may already have training in (e.g. the ALERT program, The Circle of Security), which have the potential to be very helpful to children and families. Therefore, we can be optimistic and hopeful that as health and education professionals we have something to offer families!

I believe that if we can instil some confidence in our professionals through understanding that there are many potential benefits of interventions, they will be more likely to assess for FASD.

References

Reid et al., (2015). Systematic review of fetal alcohol spectrum disorder interventions across the lifespan. Alcoholism: Clinical and Experimental Research.

Soh et al. (2015). Self-regulation therapy increases frontal gray matter in children with fetal alcohol spectrum disorder: evaluation by voxel-based morphometry. Frontiers in Human Neuroscience.

Petrenko, C., Pandolfino, M., & Robinson, L. (2017). Findings from the families on track intervention pilot trial for children with FASDs and their families. Alcoholism: Clinical and Experimental Research.

Dearman et al., (2017). A descriptive study of a community-based home visiting program with preschool children parentally exposed to alcohol. Journal of Population Therapeutics and Clinical Pharmacology.

24-Aug-2017 – FASD International Awareness

Holding a FASD Awareness event in September? Let us know what it is and you will be eligible to win one of these fantastic books!

  • Children of the grog by Lorian Hays
  • Parenting a child with an invisible disability by Julia Brown and Dr Mary Mather
  • Trying differently rather than harder by Diane Malbin

All 3 books are being raffled so you have a better chance of winning a prize. To register click here

08-Aug-2017- Safe in the community

Safe in the Community

You are invited to a meeting on keeping people with disability safe

The names of the people running the meeting are Jill Mason, Anna Posselt and Jane Rosengrove.

They will talk with you about:

  1. How to stop people taking your money or taking your things,
  2. How to stop people from hurting you or your feelings,
  3. What to do if people say or do mean things,
  4. What to do when people do not help you when they should,
  5. What to do if people do not listen to you.

Jane has a disability and she will talk about how she keeps herself safe.

Afternoon Tea provided

Catch Bus 24 from St Georges Terrace in Perth

Get off on Nicholson Road after Rupert St in Subiaco

To let us know that you want to come along, go to the website shown below or phone Mary on 9420 7230 on Mondays, Tuesdays or Fridays

https://www.eventbrite.com.au/o/developmental-disability-wa-2046684199?s=46101795

For more information contact:

Mary Butterworth

Developmental Disability WA

Phone 9420 7230 on Mondays, Tuesdays and Fridays

mary.butterworth@ddc.org.au

This meeting is being run by People with Disabilities WA,

Women’s Community Health Network WA and Developmental Disability WA.

01-Aug-2017 – Working with Adolescents and Adults with FASD

FASD – Fetal Alcohol Spectrum Disorders Working with Adolescents and Adults with FASD Gold Coast Workshop 27rd July 2017

To view click here

14-Nov-2013 – Working with Adolescents and Adults with FASD Gold Coast Workshop

What are your experiences working with adolescents and adults with FASD? What would you like to know about FASD and adolescents and adults?

Read more

26-Jul-2017 – Parent and carer survey

Improving screening for young children with fetal alcohol spectrum disorder (FASD).

We would like to thank all of the parents and carers who have responded to the call for research participants so far- the response has been fantastic.

We are currently seeking parents and carers of young children- between 3 and 8- with a diagnosed or suspected FASD to participate in a telephone interview about some of the common difficulties and challenges faced by your children.

If you would like to participate please contact Stewart McDougall using any of the contact details below.

You will be reimbursed for your time with a $20 Coles Myer gift-card.

Telephone or SMS(08) 8302 2983 or 0433 670 749
EmailStewart.mcdougall@unisa.edu.au
Surveymonkey linkProvide contact details and we will contact you

https://www.surveymonkey.com/r/7QLSPH7

25-Jul-2017 – Special Invitation to health professionals

Special Invitation:

Sent on behalf of Professor Elizabeth Elliott

I would like to invite you (as an individual health professional) or your clinic to register for the FASD Hub Australia Service Directory – an online directory of FASD experienced and informed health professionals in Australia.

The FASD Hub Australia website will create a single site to help make finding information and services easier whether you are a health professional, teacher, justice professional, service provider, researcher or parent and carer. For more information about the website visit www.fasdhub.org.au

The Service Directory will be a critical part of the FASD Hub Australia website that will be launched in early September 2017. I encourage you to register by COB Friday 11 August – this will allow us time to enter the information onto the Hub ready for launch.

For the Service Directory you can register as either a clinic and/or as an individual health professional. Once you have completed the registration form for one category you will be asked if you also want to register for the other category. Click on ‘No’ if you don’t wish to register for the second category and the registration process will be complete. I encourage you to provide details of your FASD-related experience and training to help guide Australian parents and carers to the most appropriate services.

Registration should take less than 5 minutes. To register please click on the following link https://www.surveymonkey.com/r/FASDhub

For further information about this FASD Hub Australia Service Directory, please contact either peter.omalley@sydney.edu.au or heather.jones@telethonkids.org.au

Apologies if you receive this invitation from multiple sources as we have asked several networks and organisations to distribute to health professionals.

Kind regards

Elizabeth Elliott AM FAHMS MD MPhil MBBS FRACP FRCPCH FRCP

Chair of the National FASD Technical Network and Lead on the FASD Hub Australia project

Elizabeth.elliott@health.nsw.gov.au

12-Jul-2017 – Pregnant Pause, FARE’s innovative public health campaign

Pregnant Pause, FARE’s innovative public health campaign that encourages mums-to-be to go alcohol free with the support of their family and friends, officially launched its latest television commercial (TVC) on the big screen at a premiere screening at Palace Electric Cinema in Canberra on Monday

05-Jun-2017 – 2017 Western Australian of the year

NOFASD Australia are very happy and proud to congratulate Dr James Fitzpatrick, a NOFASD ambassador, on winning the profession award for the 2017 Western Australian of the year. More info

12-May-2017 – You are invited to take part in an online consultation on the NDIS Code of Conduct

You are invited to take part in an online consultation on the NDIS Code of Conduct and to promote the consultation among your membership.

The NDIS represents a fundamental change to how services for people with disability are funded and delivered across Australia. A new NDIS Quality and Safeguarding Framework (the Framework) has been developed to ensure that all NDIS participants have the same protections, regardless of where they live in Australia.

One part of the new Framework is an NDIS Code of Conduct. A Code of Conduct can clearly set out expectations on providers and workers delivering NDIS supports and services and enable action against providers and workers if they engage in unacceptable behaviours.

I welcome your ideas and feedback on the content of the NDIS Code of Conduct. A Discussion Paper is available at www.engage.dss.gov.au, including versions in Easy English and audio formats. You are encouraged to read the Discussion Paper, complete the quick survey on the website, or upload a submission if you have more detailed feedback to contribute to the discussion. Your input, along with others who contribute to the consultation, will be considered as we finalise the content of the Code of Conduct. The closing date for completing surveys and uploading submissions is 5pm (AEST), 21 June 2017.

21-Apr-2017 – Parent Carer Survey about FASD diagnosis

Improving screening for young children with fetal alcohol spectrum disorder.

Are you currently caring for a young child who has been diagnosed with a fetal alcohol spectrum disorder?

We are seeking parents and carers currently raising a young child who has been diagnosed with a FASD to take part in the first stage of a research project aiming to enhance the screening of young children suspected of having FASD.

We would like to invite you to participate in a telephone interview to discuss the challenges experienced by children with a FASD that you are caring for, or have cared for.

You will be reimbursed for your time with a $20 Cole Myer gift-card.

If you would like to participate, please contact Stewart McDougall, or leave a message with your contact details and we will contact you

Telephone or SMS(08) 8302 2983 or 0433 670 749
EmailStewart.mcdougall@unisa.edu.au
Surveymonkey linkProvide contact details and we will contact you

https://www.surveymonkey.com/r/7QLSPH7

We understand the challenges associated with obtaining a diagnosis may mean that you strongly believe that a child has FASD but has not received a diagnosis yet. If this describes your situation, please contact the research to discuss your potential participation in the research project.

This project has been approved by the University of South Australia’s Human Research Ethics Committee. In accordance with ethics procedures, data will only be accessible by the researchers and confidential data will be securely stored by UniSA for 5-years prior to being destroyed.

If you have any ethical concerns about the project or questions about your rights as a participant, please contact Vicki Allen, the Executive Officer of the Ethics Committee, Tel: +61 8 8302 3118; Email: Vicki.allen@unisa.edu.au

13-Apr-2017 – Parents, carers and adults living with FASD we need you help!

Brief survey – parents/carers and adults living with FASD

We’re seeking your help with developing a new national website (the FASD Hub) and have 10 survey questions which will take less than 10 minutes to answer. The survey closes in two weeks – Thursday 27 April.

Your opinions, insights and experience will ensure we create a website that is useful to everyone. No identifying information is collected in this survey and it has ethics approval from the University of Western Australia (RA/4/1/9040).

Please use this link https://curtin.au1.qualtrics.com/jfe/form/SV_eDmQBcMy3onK1jD

Background: the FASD Hub

The FASD Hub project aims to create a single web portal to make finding FASD information and services easier – whether you are a health professional, parent/carer, or work in other professions working clients with FASD, research or policy. The project is funded under the Australian Government’s FASD Action Plan 2013-2016 which identified the need to create a single authoritative source for all Australian FASD information that is up-to-date and evidence-based.

The FASD Hub does not aim not to duplicate existing online information. It will support and build upon the excellent work done by existing Australian FASD resources. FASD HUB Project partners include NOFASD Australia, University of Sydney, Menzies School of Health Research, Australian and New Zealand FASD Clinical Network, FASD Research Australia Centre for Research Excellence.

For more information about the project please contact:

31-Mar-2017 – Train it Forward: a Masterclass for FASD

NOFASD Australia and the Drug Education Network would like to invite you to:

Train it Forward: a Masterclass for FASD

This event will support delegates to be the ‘go to’ person in their organisation for information regarding Fetal Alcohol Spectrum Disorder (FASD). After completing this masterclass, delegates will be able to deliver NOFASD Australia authorised training within their own workplaces and communities, to enable a better quality of life for those with lived experience of FASD. The training will enhance knowledge and understanding of FASD and enable delegates to easily share relevant knowledge with colleagues.

Delegates will each receive a range of relevant and useful FASD resources as handouts for duplication and all the relevant electronic links are provided. In addition, delegates will also be introduced to a range of resources, information, and connections from the Drug Education Network (DEN) that will enable them to keep families and communities safer in relation alcohol and other drugs.

Event: $95.00 (includes lunch and materials).

Date and Time

Thursday, 15 June 2017

10:00 am – 3:00 pm AEST

Location

“The Grange” Meeting & Function Centre

4A Commonwealth Lane

Campbell Town, TAS 7210

Further information and registration

Register here:

https://fasdmasterclass.eventbrite.com.au

Special Dietary Requirements:

If you have any special dietary requirements please email Robyn

prior to the 10th June with details – Robyn@nofasdaustralia.com

17-Mar-2017 – FASD conference

2017 National Fetal Alcohol Spectrum Disorder (FASD) Conference in Calgary, Alberta on October 24-27, 2017.Call for Abstracts will be open from March 1 to April 5, 2017.

Read more

06-Feb-2017 – 7th International Conference on Fetal Alcohol Spectrum Disorder

7th International Conference on Fetal Alcohol Spectrum Disorder is being held in Vancouver BC on the 1st to the 4th of March 2017…….

Click here

20-Jan-2017 – Abstract submissions for GAPC conference extended

The Global Alcohol Policy Conference will be held in Melbourne this year from the 4th – 6th of October. This is an international conference focused on alcohol policy and the evidence for action. FASD will be a stream in the conference and there is no doubt that the evidence now available on FASD requires policies around prevention, awareness raising, diagnosis and intervention. NOFASD is keen to support this opportunity raise awareness of FASD. The abstract deadline has been extended until….

GAPC2017-extension-01

2016

03-Dec-2016 – 12 Mocktails of Christmas

Count down to Christmas with the 12 mocktails of Christmas advent calendar

The silly season is now upon us and the diary is jam packed with function after function, family gatherings, parties and catch ups all featuring lots of food, drinks and alcohol. For those who are pregnant, planning a pregnancy or taking a break from alcohol, Christmas often means trying to fend off the constant offers of alcoholic drinks while making the most of your sparkling water.

NOFASD and Pregnant Pause (FARE – Foundation for Alcohol Research and Education) want to ‘rock the mock’ this Christmas and have compiled the best mouth-watering mocktails for their 12 Mocktails of Christmas advent calendar. When mocktails taste this good, who needs alcohol? Ice-cold, fruity and delicious, these handpicked cocktails sans the booze are easy to make and ideal for all occasions. Save the plastic cups for picnics, these liquorless libations need to be served up in proper glassware – going alcohol free doesn’t mean being demoted to the kiddies table.

12 Mocktails of Christmas will help you count down to the big day through an interactive advent calendar slowly revealing a new recipe during December. So, whether you’re pregnant, planning a pregnancy, on a health kick, the designated driver or prefer not to drink alcohol or want to be the hostess with the mostest, why not beat the heat this Christmas and with mix it up with these tasty mocktails.

12%20Mocktails%20of%20Christmas_Mocktail%2012

Fruity Father Christmas punch

250g strawberries, halved

60g raspberries

75g blueberries

1 ripe kiwifruit, peeled, finely chopped

2 cups cranberry juice

2 cups of raspberry juice

4 cups chilled lemonade

2 cups chilled pineapple juice

1/4 cup fresh mint leaves

Divide the strawberries, raspberries, blueberries and kiwifruit evenly among 2 ice-cube trays. Cover with cold water and place in the freezer for 4 hours or overnight until set.

Combine the fruit juice, lemonade and pineapple juice in a large serving jug. Add the ice cubes and mint, and stir to combine. Serve immediately.

http://www.taste.com.au/recipes/2852/santa+claus+punch
12%20Mocktails%20of%20Christmas_Mocktail%2011

Ginger beer and pineapple punch

850ml unsweetened pineapple juice

750ml good ginger beer

½ an ice cube tray of tea ice cubes

a handful of fresh mint sprigs

slices of your favourite fruit, like lime or orange

the pulp from one large passionfruit (optional)

Pour it all into a jug, stir and serve immediately. Make sure each glass gets some tea ice cubes

http://allrecipes.com.au/recipe/10265/ginger-beer-and-pineapple-punch.aspx

12%20Mocktails%20of%20Christmas_Mocktail%2010

Pink grapefruit ‘margaritas’

2 tablespoons coloured icing sugar

1 lime

6 teaspoons pomegranate syrup or grenadine

1 ½ cups pink-grapefruit juice

Place icing sugar in a shallow dish or plate. Slice six thin rounds from the middle of lime; set aside. Rub lime wedge around rims of six glasses; dip each rim in sugar to coat. Pour 1 teaspoon pomegranate syrup into bottom of each glass.

Place grapefruit juice and 2 cups ice cubes in a blender. Process on high speed until ice is crushed. Pour frozen mixture into martini glasses, and stir to combine with syrup. Garnish with reserved lime rounds or fresh seasonal berries, and serve immediately.

http://www.marthastewart.com/334284/pink-grapefruit-margaritas

12%20Mocktails%20of%20Christmas_Mocktail%209

Bellini Cocktail

1/4 cup peach nectar, chilled

3/4 cup ginger ale, chilled

1/4 cup fresh fruit or berries of your choice

Pour peach nectar evenly between two champagne glasses. Top with ginger ale and fresh fruit berries. Serve immediately and enjoy.

Modified from recipe at http://www.tablespoon.com/recipes/peach-bellini-mocktails/00b37cf1-3fc5-423c-9a08-fab19d892a34

12%20Mocktails%20of%20Christmas_Mocktail%208

Sparkling sangria

4 cups black grape juice

1 plum

1 peach

2 clementines or mandarins

6-8 strawberries

2 cups ginger ale

A bunch of mint

Quarter plum and peach, and remove pits. Place fruit in a large pitcher.

Remove peel from clementines, halve, and place in pitcher.

Remove greens from berries, halve, and place in pitcher.

Cover with grape juice. Stir well, and let sit in fridge for 1-2 hours (or more).

Mix with ginger ale and add mint just before serving.

Modified from recipe at http://jensfavoritecookies.com/2013/04/05/sangria-mocktail/

12%20Mocktails%20of%20Christmas_Mocktail%207

Shirley temple

4 tbsp grenadine syrup

2 cups ginger ale

1 Maraschino cherry

Pop Rocks (optional)

Rim glass with pink Pop Rocks. Add grenadine syrup to ginger ale. Garnish with a maraschino cherry

Modified from recipe at http://www.parenting.com/gallery/mocktails-recipes?page=5

12%20Mocktails%20of%20Christmas_Mocktail%206

Chocolate Mock-Tini

1/2 cup chocolate milk

1 cup mint choc chip ice cream

Ice

Drinking chocolate powder

1 candy cane (optional)

Wet rim of a martini glass and dip into drinking chocolate powder. Blend together chocolate milk, mint-chocolate chip ice cream and 4 ice cubes and add to martini glass. Garnish with candy cane.

Modified from recipe at http://www.parenting.com/gallery/mocktails-recipes?page=3

12%20Mocktails%20of%20Christmas_Mocktail%205

Snuggles on the beach

1/3 cup cranberry juice

¼ cup grapefruit juice

40 mL peach nectar

2 teaspoons of grenadine

¼ cup of ginger ale

Throw everything in a highball glass with ice. Stir. Garnish with an orange round and some cherries. Drink up! Feel free to increase quantity to make enough for the entire party or tweak the ingredient amounts to your taste.

Modified from recipe at http://mixthatdrink.com/cuddles-on-the-beach/

12%20Mocktails%20of%20Christmas_Mocktail%204

Apple fake-tini

1 cup sparkling apple juice (preferably dry)

ice for mixing

cinnamon sugar for rimming the glass

orange or cinnamon stick to garnish (optional)

For an extra kick add 2 tablespoons of Ginger-Cinnamon syrup:

Mix 1 cup sugar, 1 cup water, 2 cinnamon sticks, and some ginger to taste in a saucepan over medium heat. Heat until sugar is dissolved, let cool and strain to remove excess ginger and cinnamon.

For the Fake-tini

Prepare martini glass by wetting the rim with sparkling apple juice and then dipping in cinnamon-sugar.
Add ice to martini shaker. Pour in apple juice (and ginger syrup if applicable). Shake and pour into prepared glass. Garnish with apple slice or cinnamon stick.

Modified from recipe at http://www.rachelcooks.com/2012/09/14/ginger-cinnamon-apple-cider-fake-tini/

12%20Mocktails%20of%20Christmas_Mocktail%203

Virgin Mary

1 litre tomato juice, chilled

2 tablespoons Worcestershire sauce

1 teaspoon Tabasco sauce

2 cups ice cubes

1 lemon, quartered

Salt and pepper

4 celery stalks and Tabasco sauce (optional), to serve

Combine tomato juice, worcestershire sauce and Tabasco in a jug. Divide ice between 4 glasses. Squeeze 1 lemon quarter into each glass. Place squeezed quarter in each in a high ball glass. Top with juice mixture. Season with salt and pepper. Serve with celery and extra Tabasco (if using)

Modified from recipe at http://www.taste.com.au/recipes/23360/virgin+mary

12%20Mocktails%20of%20Christmas_Mocktail%202

Mockmosa

2 parts orange juice

3 parts dry sparkling white grape juice

Mint (optional)

Pour the orange juice into a flute glass and then pour the sparkling white grape juice. Optionally, you can garnish with a mint sprig.

Modified from recipe at http://mixthatdrink.com/mockmosa-non-alcoholic/

12%20Mocktails%20of%20Christmas_Mocktail%201

Nojito

12 to 14 small mint leaves or 6-8 big ones

30 ml fresh lime juice

2 tablespoons brown sugar

120 ml of sparkling mineral water

Put the mint leaves, lime juice and brown sugar in a tall cocktail glass and muddle the leaves. Fill the glass with ice cubes and add the mineral water. Stir to mix up the sugar. Garnish with another mint sprig.

Modified from recipe at http://mixthatdrink.com/nojito-cocktail-non-alcoholic/

01-Dec-2016 – 12 Mocktails of Christmas

Count down to Christmas with the 12 mocktails of Christmas advent calendar

The silly season is now upon us and the diary is jam packed with function after function, family gatherings, parties and catch ups all featuring lots of food, drinks and alcohol. For those who are pregnant, planning a pregnancy or taking a break from alcohol, Christmas often means trying to fend off the constant offers of alcoholic drinks while making the most of your sparkling water.

NOFASD and Pregnant Pause (FARE – Foundation for Alcohol Research and Education) want to ‘rock the mock’ this Christmas and have compiled the best mouth-watering mocktails for their 12 Mocktails of Christmas advent calendar When mocktails taste this good, who needs alcohol? Ice-cold, fruity and delicious, these handpicked cocktails sans the booze are easy to make and ideal for all occasions. Save the plastic cups for picnics, these liquorless libations need to be served up in proper glassware – going alcohol free doesn’t mean being demoted to the kiddies table.

12 Mocktails of Christmas will help you count down to the big day through an interactive advent calendar slowly revealing a new recipe during December. So, whether you’re pregnant, planning a pregnancy, on a health kick, the designated driver or prefer not to drink alcohol or want to be the hostess with the mostest, why not beat the heat this Christmas and with mix it up with these tasty mocktails.

12%20Mocktails%20of%20Christmas_Mocktail%201

Nojito

12 to 14 small mint leaves or 6-8 big ones

30 ml fresh lime juice

2 tablespoons brown sugar

120 ml of sparkling mineral water

Put the mint leaves, lime juice and brown sugar in a tall cocktail glass and muddle the leaves. Fill the glass with ice cubes and add the mineral water. Stir to mix up the sugar. Garnish with another mint sprig.

Modified from recipe at http://mixthatdrink.com/nojito-cocktail-non-alcoholic/

07-Oct-2016 – Busting FASD Myths

Busting FASD Myths

Free Webinar

Thursday 20th of October 2016

This webinar will assist any practitioner, parent or carer that that may interact with someone who has lived experience of FASD. There are multiple myths associated with FASD, and this webinar will challenge those myths, discuss the evidence, and present the facts.

To register please fill out form in link below:

http://omnovia.redbackconferencing.com.au/landers/page/96a556

About your Presenter – Anne Heath

Anne Heath has a background in community services (alcohol and drug, youth work, disability, mental health, homelessness) and has directly worked with, or supported staff who have worked with children and adults living with FASD. Anne has a Master of Education, and currently works in the Faculty of Education at the University of Tasmania, teaching Human Development to undergraduate teaching students.

28-Oct-2016 – Busting the FASD Myths

If you missed our webinar on Busting the FASD Myth.
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click here

27-Sep-2016 – Launch of FASD handbook

Launch of the new FASD Handbook resources from DEN in Tasmania

Commentary by Connie May, MHST

connie

As a public relations volunteer for several One Generation Changes projects, one of my personal missions is to help prevent the population harms that stem from substance use, including smoking and alcohol, two of the largest threats to our community health and social well-being.

A One Generation Changes project is a community led project that aims to make a difference for disadvantaged children within THIS generation or the one immediately following; using a “pay it forward” type of volunteerism.

My interest in helping spread the word about FASD risks is three fold.

One: people close to me are dealing with the impacts of unintended alcohol exposure to children during pregnancy.

Two: I’m well aware of the strong drinking culture of our country as a population health researcher/writer and believe the incidence of FASD is far greater than most of us currently recognise or are willing to openly acknowledge, and that this means adequate supports are difficult to come by.

Three: If every person impacted by FASD has a social circle of influence of at least 100 people, and we can prevent FASD as much as possible and support those that are already impacted by the condition, then ultimately millions of people might be helped.

So when I was asked if I could take some photographs at the DEN’s launch in Tasmania’s Parliament (by Hon Michael Ferguson), I jumped at the chance.

What I wasn’t prepared for, however, was how emotionally moved I would be by the event.

Here’s why I was moved to tears filming the launch of The FASD Prevention Handbook on the 7th of September 2016.


Collaboration and Sharing

Firstly, I was moved by the beautiful sense of camaraderie and cooperation between the different groups that helped to bring this resource to fruition. The ambiance was so warm and inclusive that it highlighted to me, again, that a collaborative cross-sector approach is too often missing from other non-profit organisations and community support groups. BIG TICKS for warmth and inclusion to the DEN crew with Shirleyann Varney, and to the Hon Michael Ferguson, MP (Tasmanian Minister for Health, Information Technology and Innovation and Leader of Government Business in House of Assembly), and to the attendees and FASD movers and shakers including NOFASD educator Anne Heath, Dr Adrian Reynolds, Grant Herring and so many others I had the pleasure to talk with on the day.

 photo-test

Shirlyann Varney and Anne Heath

Acknowledgement & Women Centred Knowledge

It was also lovely to see that DEN made note of the people that were diligent in bringing the resource to fruition and acknowledge the support they had from NOFASD.

Awareness and Intent to Support Impacted Families

Alcohol intake, admittedly, is a popular past time and income source for many agencies. As part of our culture and economic system, it can be difficult for people to face that it has serious harms to our population. It takes even more guts to admit we need to take serious steps to acknowledge those harms and do something productive about preventing them and helping impacted families. But everyone who attended the launch clearly recognised the need, and were passionate about making a difference in sharing knowledge and resources to help.

The Tasmanian Minister of Health Clearly understands the Issues surrounding FASD and the need for more support

DEN

Often launches of new community resources are seen as an obligatory attendance function by most politicians. Not so for the launch of the FASD Handbook by the Hon Michael Ferguson, MP, Tasmania’s Minister of Health.

Ferguson spoke articulately and passionately about how moved he has been by the information he’s seen on FASD in the community, from the likes of DEN, FASD and media reports, which fortunately are increasing at exponential rates as our understanding – and community interest – grows. He also noted he was particularly moved by a Four Corners report Hidden Harm (By Deb Whitmont and Mary Fallon) which is available at this link: http://www.abc.net.au/4corners/stories/2015/11/02/4341366.htm.

All of which goes to show you that it takes a community to raise a child, and a community to become aware and caring about FASD to raise a child that isn’t impacted by prenatal exposure to alcohol, by helping EVERYONE understand the safest options about drinking during pregnancy.

Which is, as we all know: NONE FOR NINE.

Many thanks to the wonderful DEN team and to NOFASD’s new Director, Louise Gray, and Educator, Anne Heath, for inviting me along to witness a milestone for Tasmania, for our Country as they help lead the way, and for people living with – or at risk of – Fetal Alcohol Spectrum Disorders.

Congratulations Tasmania, DEN and Australia for a milestone year in raising awareness of FASD and putting more energy, funding and time into prevention and support measures.

Connie May, MHST

One Generation Changes

Email: writer-muse@live.com

Den

Den

13-Sep-2016 – Webinar

If you missed our webinar watch it here

Click here

12-Sep-2016 – Watch our webinar

If you missed our webinar watch it here

Click here

01-Sep-2016 – International FASD Awareness Day

Show your support by pledging to not consume alcohol on this day!

Register for our free webinar on September 9th

click here

Missed out on our last webinar Understanding the learning challenges for children living with FASD

Click here

15-Aug-2016 – Free Webinar

Title: Understanding the learning challenges for children living with FASD

Description: Aimed at those that work with children in the learning environment, this webinar will assist teachers and educators to understand the challenges that children with FASD face in their learning journey. The webinar will:

– Outline what FASD is,

– Help the participant respond to a child with FASD,

– Provide strategies to support the child in the classroom.

– Advise the participant where to go for more assistance and information

Presenter: Anne Heath has a background in community services (alcohol and drug, youth work, disability, mental health, homelessness) and has directly worked with, or supported staff who have worked with children and adults living with FASD. Anne has a Master of Education, and currently works in the Faculty of Education at the University of Tasmania, teaching Human Development to undergraduate teaching students.

22-Apr-2016 – UPDATE: Conference Program Released – 2016 National Foster & Kinship Care Conference

Click to read the program and details about the guest speakers, plus link to registration.

2015

20-Nov-2015 – Release of consultation report – NDIS quality and safeguarding

Earlier this year consultation on quality and safeguarding in the National Disability Insurance Scheme occurred. The consultation ran from February to April 2015 and included 16 public meetings in capital cities and regional locations in each state and territory, 7 provider meetings in locations around Australia, 6 workshops with specific stakeholder groups 220 submissions, 585 questionnaire responses and an online discussion forum.

On Friday, 13 November 2015, Commonwealth, State and Territory Ministers agreed to publish a report on the outcomes of the consultations. The report is available here. The design of the new nationally consistent quality and safeguarding system will be considered by the Ministers in early 2016 and will be informed by the consultation report.

13-Nov-2015 – Stepping Stones NSW – Project Update – FREE PARENTING SEMINARS

The Stepping Stones project in New South Wales has come a long way in the past 12 months.

To find out where parents of children with a disability can get free support right now, click here.

Currently, we have almost 30 free seminars for parents of children with a disability listed on our website in different country and city locations, with many more to come next year. We also have 100 professionals available to provide individual parenting support, and a new online seminar series parents can watch from the comfort of their own home.

Please be aware that Stepping Stones is available to families known to your organisation even if your organisation is not a direct participant in the program.

Stepping Stones is all about helping parents feel more confident and competent in their parenting. Parents learn new ways to handle their child’s emotional and behavioural challenges, so everyone can enjoy life more. It’s amazing how small changes can make a big difference.

So if you could do one thing today, could you like us on Facebook and forward this email and attached update to colleagues, friends and families who you think might be interested to know free parenting support is now available in NSW. You can also order free brochures and posters from our project team to help spread the word.

Yours sincerely,

Einfeld

Professor Stewart Einfeld
Principal Investigator, SSTP Project
FHS Senior Scientist, The Brain and Mind Centre

13-Nov-2015Telethon Institute November 2015 Newsletter

The Telethon Kids Institute Alcohol, Pregnancy and FASD Research Program November 2015 Newsletter is now available now. Use the link below to download more information.

Please forward the page link to friends and colleagues.

Download

07-Oct-2015 – NOFASD Client Charter

The NOFASD Australia have published the Client Charter, now available to download under ABOUT US and COMMUNITY.

18-Sep-2015 – Sydney Parents & Carers Support Group

NOFASD Australia is pleased to offer a support group in Sydney for parents and carers of children with a diagnosis, or children recognised at risk of, Fetal Alcohol Spectrum Disorder. Our experienced parent Amanda will run the group. If you are interested in attending monthly meetings at a central venue, please email us at admin@nofasdaustralia.com or phone 1300 306 238 for more information.

(This information has been sent via separate email to NSW members. If you are subscribed but did not receive it, please re-subscribe here as your details are not up to date.)

24-Jul-2015 – FASD in Review examines “Cost Attributable to Fetal Alcohol Spectrum Disorder in the Canadian Correc

FASD in Review examines an article that is currently in press with the International Journal of Law and Psychiatry, titled “Cost Attributable to Fetal Alcohol Spectrum Disorder in the Canadian Correctional System” (to be published in 2015). This study estimates the costs for youths (12-17 years old) and adults (18+ years old) with Fetal Alcohol Spectrum Disorders (FASD) in the Canadian correctional system in 2011/2012. Estimating these costs is vital for quantifying the social impact of FASD and demonstrating its significance as a public health issue.

Read the FASD In Review article here.

26-Jun-2015 – 9News: Call to ban booze ads during sports

Alcohol advertising should be banned during sports broadcasts before 8.30pm and a minimum floor price on booze should be adopted. Those are just two of 23 recommendations a parliamentary committee has made to government it says should be urgently adopted because of the damage alcohol is doing to some indigenous communities. Read the news report here.

Click here to read the complete report: “Inquiry into the harmful use of alcohol in Aboriginal and Torres Strait Islander communities: Alcohol, hurting people and harming communities” © Commonwealth of Australia 2015

15-May-2015 – NT AOD Sector Forum 2015 22 – 24 June, Alice Springs

ABSTRACTS are invited for half hour presentations at the 2015 NT AOD Sector Forum. Please send your abstract to admin@aadant.org.au. Registration for AADANT financial Members is $150, AADANT non-financial Members is $250 and Non Members is $350. Contact [email protected] for your member code before registering. Click here for further details.

12-Jun-2015 – Advance Notice & Call for Abstracts – Research on Adolescents and Adults: If Not Now, When?

The Canadian 7th National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder (FASD) has issued advance notice & call for abstracts.

Read more here.

12-Jun-2015 – The 2015 Australian Winter School Conference, Brisbane QLD, 22 – 24 July

“Lives Lived Well is proud to bring you the 2015 Australian Winter School Conference. Unleash Potential is the exciting theme of the 2015 conference. With a focus on new ideas, change and advancement we hope to unlock inspiration and the best way of doing things. Through presenting the latest in alcohol and other drugs treatment, practices, research and information, we strive to unleash the potential within: our workforce – increasing skills and knowledge and gaining greater awareness of trends and issues to unleash your practice and career potential; consumers and clients – helping others to realise their life potential the community -exchanging views and experiences on how the alcohol and other drugs sector has and is responding to past and emerging challenges and needs, identifying opportunities that ultimately benefit the communities in which we work and live the sector – together through networking, sharing and partnerships we can expand and strengthen to achieve our united potential as a sector. Through advocacy we can influence policy and decision makers.” For more information click here.

12-Jun-2015 – NIH study finds alcohol use disorder on the increase

Alcohol use disorder, or AUD, is the medical diagnosis for problem drinking that causes mild to severe distress or harm. A new study supported by the National Institute on Alcohol Abuse and Alcoholism (NIAAA), part of the National Institutes of Health, reports that nearly one-third of adults in the United States have an AUD at some time in their lives, but only about 20 percent seek AUD treatment. The study also reveals a significant increase in AUDs over the last decade. The new findings are reported online today in the journal JAMA Psychiatry. Read more.

13-May-2015 – Disability Speaks: The good, the bad and the ugly

The 2015 Federal Budget has been positively received. But in amongst the creating jobs and small business focus and other targeted initiative what does it mean for people with disability in SA. As is always the case what is said by politicians may not be what is delivered. To read the full media release, click here.

01-May-2015 – Radio NZ National Insight Programme

Radio NZ National Insight Programme airing @ 8.15am on Sun May 3rd, will feature FASD and its implications for criminal justice. Interviews by Insight producer/presenter Philippa Tolley, include those caring for an affected loved one, Judge FitzGerald and Dr Valerie McGinn. A promo will be on Morning Report Friday 1 st and the programme repeated the following Mondays at 9:30pm and Wednesdays at 12:30am. Click here to listen.

24-Apr-2015 – Stepping Stones Triple P Project – For NSW Parents

Our team at the University of Sydney has returned from the Easter break feeling enthusiastic and ready to take the Stepping Stones Triple P Project to the next level.

Click here to read how NSW parents of children with a disability aged 2 to 12 can get two years of free parenting support.

For a parent-focussed version, click here.

Over the next three months our team will train 100 health, education and special needs’ professionals to provide free Stepping Stones parenting support. The feedback we’re receiving from fellow project teams in Queensland and Victoria – who are already providing free support to parents as part of this project – is extremely encouraging.

Our team can’t wait to start helping New South Wales’ families get on top of their child’s behavioural issues, so they too can feel more confident and competent in their parenting and everyone can enjoy life more.

The strong support of government agencies, disability support organisations, private practitioners and other stakeholders is crucial to the success of this project. Please do what you can to let parents know about the help available from late June.

Your sincerely,

Einfeld

Professor Stewart Einfeld
Principal Investigator, SSTP Project
FHS Senior Scientist, The Brain and Mind Research Institute

14-Apr-2015 – Foetal Alcohol Spectrum Disorder and false confessions

Teina Pora spent more than twenty years incarcerated for the rape and murder of Auckland woman, Susan Burdett. His confession to the crime was the central piece of evidence that convicted him. But the highest court in the Commonwealth, the UK’s Privy Council recently found that Pora’s confession was unreliable and that the case amounted to a miscarriage of justice. Key to that finding was evidence from specialists in Foetal Alcohol Spectrum Disorder (FASD). How often is FASD considered a factor in the Australian criminal justice system? Listen or read the transcript on ABC Radio National’s website.

16-Apr-2015 – Presentations from the 6th International FASD Conference held in Vancouver, 4-7 March 2015

Click here to go to the PDFs of the conference presentations.

16-Apr-2015 – Stepping Stones Triple P Project – Free Parenting Support

By mid-2015, NSW parents and caregivers of children with a disability will have free access to evidence-based parenting support through the Stepping Stones program. Find out more here. By July, we expect to have a workforce of about 100 professionals trained and ready to provide group and individual parenting support at different locations around the state. NSW professionals who work in the child disability field can apply to be part of this team and receive free Stepping Stones training and resources. Click here for more details. We’re also asking parents of children with a disability aged 2 to 10 who haven’t filled in the My Say survey yet to do so by going to www.mysay.org.au. This is the first place for parents to go to express their interest in being contacted when a Stepping Stones program becomes available near them. I look forward to working closely with the many organisations, support groups and agencies in NSW who have so much invested in helping families impacted by disability. I hope we can support your clients and families through this project.

Yours sincerely,

Einfeld

Professor Stewart Einfeld
Principal Investigator, SSTP Project
FHS Senior Scientist, The Brain and Mind Research Institute

09-Apr-2015 – One glass of wine can stop foetus breathing, study claims

The Irish Times published this article about Professor Peter Hepper from Queen’s University Belfast who carried out a study, the first of its kind, looking at the effects of low-level alcohol exposure on foetuses in the womb through the use of 18-weeks scans on women who drank two and a half units of alcohol per week; the equivalent to a glass of wine (200ml).

Read the article here.

18-Mar-2015 – Bar’s decision to refuse pregnant woman wine divides opinion

Read and watch NZ’s One News report: Bar’s decision to refuse pregnant woman wine divides opinion. The woman, in her 36th week of pregnancy was refused service “for health reasons.” Click here to watch the report.

16-May-2015 – The Preventable Disabilty – 2015

To read the report from the Northern Territory Legislative Assembly Select Committee on action to prevent Fetal Alcohol Spectrum Disorders published February 2015, click here.

2014

08-Nov-2014 – Fetal Alcohol Spectrum Disorders – Strategies to address information gaps

This project report, released 7 November 2014, by Australian Institute of Health and Welfare Canberra, presents information about data collection in relation to identifying ways to facilitate the collection and reporting of FASD related information in Australia. To read the document, click here.

25-Oct-2014 – Bottle babies: the devastation of foetal alcohol spectrum disorders

No one’s sure how many Australians are affected by foetal alcohol spectrum disorders, but the consequences for those who are can be devastating.

In a life too often measured by inability, Lola Miers has multiple roles. She is a daughter, sister, friend and mother of a six-year-old. She can cook and keep house, her simple life dictated by the tasks listed on a whiteboard by her stove. She is also a keen spender and master of rote learning.

But mostly she is defined by what she cannot do – understand the consequences of her actions, for example, or love more than one person at once – and the explosive episodes that mark many of her days. “I get very overloaded in a short amount of time; if I burn my dinner, I slam it on the ground and then I start crying,” she says matter-of-factly from the table in her tidy kitchen. “People look at me and say, ‘You’re so bright and bubbly. You don’t look like you’ve got anything wrong with you.’ ”

Lola Miers lives with a foetal alcohol spectrum disorder (FASD), one of a range of incurable but preventable conditions caused by exposure to alcohol in the womb. Born midway through one of her mother’s drinking binges, she arrived in the world suffering from alcohol withdrawal. But it was the silent symptoms of her belated FASD diagnosis – the brain damage that led to lifelong learning difficulties, the risky behaviour over which she has no control, her poor memory – that have endured.

At 33, she can rattle off rules without understanding them. Because she is unable to comprehend an abstract concept like responsibility, she is happy for her foster parents to raise her young daughter, whom she almost regards as a little sister. “Mum and Dad take us to the zoo, they have taken us to wildlife parks.” And she is so easily overstimulated, by everything from background noise to crowds, that she had been known to walk out of a job just to quiet her overwhelmed mind. “When there’s all these people saying, ‘We want this, we want that’, it just feels like I am going to have a panic attack. I get quite short of breath, and chest pains, and I feel like everything is going to go ‘bang’. I can’t sort of relax and hold it together.”

She seems to live in an endless teenage loop. But because she is the product of a largely invisible disorder, Lola passes through her adult years, as she did her childhood, behind a “veil of competency”, a term her mother Sue has adopted in the decades since she fostered Lola as a baby and realised she was not quite like her other three children.

“My parenting wasn’t working with her,” says Sue Miers, a warm, capable grandmother who, at 63, still has to parent Lola as if she was an adolescent, making sure she attends appointments and providing her with constant reinforcement. “You tell other children not to touch a hot stove and they don’t. Every day I would say ‘hot, hot’ and she would still go and do it again.

It took weeks before she wouldn’t. And that was the same with everything. Eventually she might learn, but it would take weeks and months for her to learn when another child might learn in a week.”

Aware of the traumatic circumstances of Lola’s delivery, Sue wondered if her birth mother’s drinking might have contributed to her ongoing difficulties. Lola did not socialise, became keenly upset if Sue varied her daily routine by, say, stopping at the shops on the way home from school, and always seemed to be in trouble. “She spent most of her very early primary school years sitting on the bench at recess time, to think about her behaviour.”

But it wasn’t until Lola was seven that Sue read about FASD. “And it just hit me in the face – not understanding cause and effect, having trouble with friendships at school, getting into trouble all the time – but I didn’t think she was doing it on purpose.” It would be another decade before Lola was officially diagnosed. But even then, there was no end to her troubles.

Foetal alcohol spectrum disorders are a group of conditions that develop in children whose brains are permanently and irreversibly damaged before they are born. They can manifest in a range of ways, from learning difficulties to developmental delays, sensory overload, impaired memory, impulsiveness and co-ordination problems. The single factor shared by everyone on the spectrum is that their mothers drank during pregnancy.

How much alcohol is enough to cause damage is unclear. “Predicting the risk in individual women is very difficult because every woman metabolises alcohol differently,” says Elizabeth Elliott, professor of paediatrics and child health at the University of Sydney.

Not everyone who drinks will give birth to a child with FASD. But the risk increases with the frequency and quantity of alcohol consumed. Timing also matters. One of the most easily identified forms of FASD is foetal alcohol syndrome, which results in obvious facial features such as small eyes, a thin upper lip, and a flat region below the nose. All of these develop during the first trimester – before many women even know they are expecting.

FASD might be avoidable, but staying safe by abstaining from alcohol is made trickier when every second pregnancy in Australia is unplanned. “No one actually sets out to do it,” says developmental paediatrician Dr Doug Shelton, who runs one of Australia’s few FASD diagnostic clinics. “Ninety-nine per cent of people who are pregnant genuinely want the absolute best for their unborn baby. In most cases they either don’t know they are pregnant … or they have these ideas that drinking a small amount might be safe.”

Until five years ago, Australian women were advised to have fewer than seven standard drinks a week while expecting, and no more than two a day – and never to get drunk. In 2009, partly as a result of more cases of FASD emerging, the National Health and Medical Research Council (NHMRC) changed its mind. It now says that abstaining is the safest option for pregnant women or those planning to have a baby.

But that message has been difficult to sell. “I stand up at meetings and people will attack me and say, ‘How can you tell women not to drink’, ” says Elliott, who was involved in framing the NHMRC’s policy. “We are quite happy to tell them not to smoke because they might have a small baby. We tell them not to eat soft cheese or smoked salmon or pâté, in case they might get a very rare infection. But we are not willing to tell them not to drink alcohol.”

According to the 2013 National Drug Strategy Household Survey, 47 per cent of pregnant women still drink. “They would have taken orange juice off the market years ago if it could cause so much brain damage,” says Sue Miers.

Cultural resistance is one of many obstacles confronting efforts to raise public awareness of the disorders. Like their presence, which can be can be difficult to diagnose visibly, the causes, effects and prevalence of FASD in Australia are largely hidden, according to a federal parliamentary inquiry report tabled in 2012: “It is likely that if FASD were a preventable disease occurring across Australia causing such lifelong disabilities and learning difficulties in children, there would [be] public awareness campaigns outlining the causes, symptoms and preventative measures. There would be public advocacy mobilised to fight for the best outcome.”

Instead, because it is a condition that is difficult to discern, specialists and families continue to battle scepticism that too often attributes the symptoms of FASD to bad parenting. “I probably come across as a fully involved parent and [many would say] that I need to get out of my adult daughter’s life,” says Sue Miers, who established the National Organisation for Fetal Alcohol Spectrum Disorders (NOFASD) in 1999. “That’s what I have been told for the last 16 years while trying to raise awareness: that I am overreacting, that FASD is not a problem is Australia. It’s a lifelong disability and we are not doing anything about it.”

Compared to many other countries, Australia has few resources to tackle the disorders. A diagnostic clinic at Sydney’s Westmead Children’s Hospital does not have ongoing funding. Another on the Gold Coast has only been running since the start of this year. While the 2012 parliamentary inquiry into FASD noted that it is becoming more prevalent, no one knows exactly how many Australians are affected. Overseas research suggests that the figure could be as high as five per cent of the population.

In an affluent pocket of Adelaide, Kerry Scholten lives with the legacy of her late mother’s addiction. Scholten was in her mid-teens when her parents divorced. Her mother started drinking heavily and within months had fallen pregnant with a second daughter. “I was the only child, Dad had left and Mum was drinking so much, and Brooke came along and I was just in love with this little person,” says Kerry, who only years later discovered that her sister had been diagnosed at birth with foetal alcohol syndrome. She is unaware of any follow-up.

Five years ago, after battling alcoholism throughout Brooke’s life, Scholten’s mother died of cirrhosis of the liver. “I think the guilt killed her more than the alcohol,” says Kerry, 41. “Seeing Brooke struggle with reading and with friends and just life, she never forgave herself.”

As a baby, Brooke had been slow to crawl, walk and talk. Primary and high school were tough. “She was never going to learn. She was never going to read properly.” At 17, unable to even manage her personal hygiene, Brooke was pregnant.

“It’s like a four-year-old having a period,” Kerry says of the incomprehensible situation that confronted her sister. Brooke was officially of age, but in reality could not even weigh up the risks she now faced as a teenage mother.

Kerry, then a single mother of four, was overwhelmed at the prospect of having to also help raise the child her sister could not. “I was just exhausted from it. I was thinking, ‘I can’t take on another baby.’ ” Eventually, Brooke and her baby son moved in. For Kerry, it was like living in a house with six children while working full time.

Somewhere in that hazy period, Kerry decided that her sister should not have any more children if she could not look after them, and sought to have her tubes tied: “The doctor was horrified, thought I was a cow.” As the primary carer of a person with FASD, Kerry was used to the personal assaults. A friend of her mother’s had once accused of her being a control freak when it came to Brooke. “Well, yeah,” she says now. “Who else will do it? Who else will look after her? She couldn’t do it herself.” But the doctor was even more direct. “He said, ‘Who gives you the right to play God?’ And I said, ‘I am the one who has to look after them.’ ” Kerry ultimately failed, and a year ago Brooke became a mother again.

Brooke, 24, and her two children now live in the UK, where they have more family, but back in Adelaide the ripples of someone else’s FASD continue to nudge at her older sister. “There’s always drama,” says Kerry. “You kind of think that when they get a bit older it’s going to get easier. But it never does.”

Life with FASD is difficult and complex, and seems to get tougher with age. “You can look after a child and coach them along at school and help them get dressed,” says the University of Sydney’s Elliott. “But once they are out into the big wide world they are vulnerable to bullying, to abuse and assault and they are vulnerable to either inappropriate sexuality on their part or by others.”

Simple life choices, such as getting a job or moving out of home, often end disastrously when there is no one around to remind you to take tablets every morning, or to brush your teeth, or shower, or pay a bill each month. As well as risky behaviour, substance abuse, including alcohol, is also a very real possibility, as is involvement with the criminal justice system; a University of Washington study found almost half of all people with FASD had been in trouble with the law.

“Many of these people are never going to achieve academically,” says Elliott. “Many of them are going to be unemployable, and many of them will develop drug, alcohol and mental health problems.” While earlier diagnosis helps manage the future, FASD is, she says, “a life sentence”.

A few years ago, Lola Miers drew a diagram to represent her life. She may have a low IQ and a limited vocabulary, but her jagged line of peaks and troughs spoke clearly of the turmoil she feels. The straight line she drew below represented her ideal life.

“People don’t realise that the things I do are terrible,” Lola says evenly, almost routinely, her back to the giant Twilight poster that dominates her living area. On the stove, potatoes and chops are already cooking for tonight’s dinner, although it’s only just gone 2pm. “After my boyfriend pushed me and hit me, I went back to him,” she continues. “The normal person would go, ‘You know what, f… you, you’re not in my life any more.’ Or you would change your number. Whereas I would give him a second chance. And that’s where I get sucked in.”

Although Lola is well into her 30s and lives alone, her mother, Sue, still refers to her, as she does others with FASD, as though she was much younger. “These are children who don’t respond to normal parenting,” says Sue Miers. “A lot of families abandon these kids because their behaviour is so bad and the professionals are saying, ‘You have got to do tough love … and you have got to hit rock bottom before you can come up again.’ But people with FASD never come back up again. Each time they just hurt themselves a little bit more, and they don’t learn from that.”

So Sue and her husband, Tony, with a lot of support from their three other adult children, have tried to construct a life for Lola that contains multiple buffers. Carers visit her when family cannot. Someone takes her shopping so that she does not immediately fritter away her small allowance on junk food or useless trinkets. When Lola appeared to be developing a drinking problem, Sue first acquainted her counsellor with her background. Before Lola takes a step, Sue has more than likely already considered its ramifications for her.

“It will be lifelong for us,” says Sue, who long ago stopped thinking that her active parenting years would end by the time her first grandchild arrived. Instead she is back raising another little girl – Lola’s – while remaining constantly vigilant for the grown daughter who still calls her repeatedly, often late at night, and cannot consider anything beyond today. “We have come to terms with that,” Sue says. “We don’t fight that any more. When we go through a bad time, we know it’s never going to last. And when we go through a good time, we know it’s never going to last.

“When I talk about my daughter, I talk about how she is at this minute because there is brightness that way. If you look at it as a whole, there is up and down. There are days when everything is brilliant. But it never lasts. But the downs never last, either. So I take it day by day. And that’s how she lives, too.”

Mothering Lola, she says, has been “interesting”. She laughs, then pauses. “Never a dull moment. Frustrating as well. That’s about all. I don’t find it a burden. But if I hear of anybody who wants to go into fostering or adoption, I get them to read up totally about FASD.

“People have got this idea that they are going to give a loving home to a child and they think that just with love and some special parenting that they can make a big difference, which they can. But I don’t think they realise that it could be a lifelong commitment that they are making to that child, who may never be able to get a job, may never be able to learn independently, who may never learn from their mistakes.”

Because in one small way, this is not like other parenting. “Love,” she says, “is not enough.”

Source: Sydney Morning Herald

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