Lililwan P Projec ject - FASD D Prev evalen ence e study i in the F Fitzroy V Valle lley
Our J r Journ rney • In 2007 l 7 leader ershi ship s shown by by local Aboriginal w women en in o our c communi unity l lobbi bied d for r restrictions s on t the s he sale o e of ful ull s stren ength t take a e away alcoh ohol ol. • The a he alcohol r restrictions w were e impl plem emented in 2 n 2007, 7, i it was then hen our c community bec ecame a e aware e of a a cond ndition t tha hat t thr hrea eaten ens t the q he qua uality of of l lif ife for or p peo eople i in ou our community. y. In 2008 T 8 The he Marulu S Strateg egy w was devel eloped ped to a o address Pr Prevention on, D Diagnos osis and • Support for tho hose a se affec ected ed by by FASD. • In O October er 2009 9 The L he Lililwan P Projec ect FASD p D prevalen ence s stud udy was i ini nitiated in o n our commun unity, b being ng the f first t to have ve e ever b been c n conduc ducted d in A Australia and a a world first p popul ulation b n based d study dy.
Marulu u Strategy P Partne ners • Nindilingarri Cultural Health Services • Telethon Institute for Kids • Patches Pediatric Child Health and Education services • Department of Education • University of Sydney • George Institute for Global Health
What is FA FASD?
Fea eatures es of of FASD SD
Fea eatures es of of FASD SD Small eye openings Smooth Philtrum Thin upper lip.
Fea eatures es of of FASD SD
Fea eatures es of of FASD SD
Ho How to diagn gnos ose F e FASD SD? Mul ulti Disc sciplinary T Team: • Paedia iatric icia ian • Occupa pationa nal T Therapi pist • Speech T h Ther erapi pist • Psychol olog ogist
ome ( FAS) Fet etal Alcohol S Syndrom + + Three facial Brain Growth features . Abnormality Restriction
Partial Fetal A Alcoh ohol ol Syndrom ome e (P (P-FA FAS) + Two facial features Brain Abnormality
Neurode developm pmental D Disorde der- Alcohol Expo posed (ND-AE AE) Brain Abnormality
What did w we d do? Located all children born in 2002 or 2003 and • currently living in the Fitzroy Valley Interviewed all parents or carers • Asked about pregnancy and birth, health, • development and early life trauma Reviewed health records • Information from most (95%) families • Each child had full medical check in addition to • FASD assessments.
Stage 1 – Results from Parent /Carer interviews Alcohol use in pregnancy by risk category: 47% 45% Did not drink Drank low risk Drank risky Drank high risk 3% 5%
Results of Lililwan Project- FASD Prevalence Study 1 in 5 children with FASD
Results of Lililwan Project – FASD Prevalence study 1 in 8 children with FAS
Benefits for r children and families.. • A F Full ll Medic ical c al check • A FASD D Dia iagnosis is an and Managem emen ent p plan • Referral's to to a appropriate e hea ealth th s ser ervices
Benefits for r our c r community ty… • Clinical guidelines – Diagnosis and care for those affected by FASD. • Marulu Unit – Advocacy and Support for children and families. • Collaborative Circle of Care – to strengthen the capacity of services to respond to the needs of children and families .
Acknowled edgem emen ents June Oscar Annette Kogolo Maureen Carter Harry Yungabun Elizabeth Elliott Barbara Lucas James Fitzpatrick Heather Carmichael-Olson Jane Latimer Claire Salter Meredith Kefford Robyn Doney Lorian Hayes Genevieve Hawkes Carolyn Hartness Julianne Try Marmingee Hand Sharon Eadie Emily Carter Charlie Schmidt Stanley Shaw Samantha Kaiser Rhonda Shandley Raewyn Mutch Marilyn Oscar John Boulton Emily Fitzpatrick Carol Bower Gemma Sinclaire Alex Martiniuk Natalie Davey Juliette O’Brien
Acknowled edgem emen ents Department of Health and Ageing Department of Families, Housing, Community Services & Indigenous Affairs National Health and Medical Research Council The Australian Human Rights Commission Yajillara Trust Ashurst Australia Save the Children Foundation for Alcohol Research and Education
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