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Inquiry into Foetal Alcohol Spectrum Disorders 2012

Legal Legal
Friday 14 December, 2012

Inquiry into Foetal Alcohol Spectrum Disorders

Australian Human Rights Commission Submission
to the Standing Committee on Social Policy and Legal Affairs

7 February 2012


Table
of contents


1 Introduction

  1. The Australian Human Rights Commission makes this submission to the Standing
    Committee on Social Policy and Legal Affairs in its Inquiry into Foetal
    Alcohol Spectrum Disorders (FASD).

2 Summary

  1. This submission proposes and outlines a human rights-based response to
    developing a national approach to the prevention, intervention and management of
    FASD.

  2. This submission includes an example of a community-led response to FASD by
    Aboriginal communities in the Fitzroy Valley, which was originally published in
    Section 3.3, Chapter 3 of the Australian Human Rights Commission’s Social Justice Report 2010. The full chapter is also attached to this
    submission to provide the context of this case study.

3 Recommendations

  1. The Australian Human Rights Commission recommends that:

    1. A human rights-based approach should underpin all measures to address FASD
      in order to protect and promote the rights of women, children, families and
      communities affected by FASD. This requires:

      1. The core human rights principles—of equality and non-discrimination,
        human dignity, participation and inclusion, empowerment, accountability, equity
        and access—guide all phases in the development, implementation, monitoring
        and evaluation of strategies, policies and programs to address FASD.

      2. The human rights standards contained in the Universal Declaration of Human
        Rights and other international human rights instruments guide prevention,
        intervention and management strategies that address
        FASD.

    2. In accordance with a human rights-based
      approach and the Convention on the Rights of Persons with Disabilities,
      prevention, intervention and management strategies should be developed,
      implemented and monitored in close consultation and active involvement of people
      impacted by FASD including children and adults, women, families and communities,
      including through their representative organisations. Strategies to address FASD
      within communities should be community-led and community focused.

    3. Education about FASD, in particular the risks of alcohol during pregnancy,
      should be provided without discrimination. Given the escalation of alcohol
      consumption during pregnancy, a population-based approach is advised.

    4. There should be measures to improve access to family planning services for
      parents, and maternal health services for pregnant women with alcohol dependency
      or at risk of alcohol dependency. This should include adequate prenatal and
      postnatal health care.

    5. In accordance with the Convention on the Rights of Persons with
      Disabilities, a national approach to the intervention and management of FASD
      should utilise a social model of disability. A social model of disability
      addresses the interactions between the impairments and the environment
      and attitudinal barriers which hinder the full and effective participation of
      people affected by FASD on an equal basis with others.

    6. There should be adequate training for health and other professionals who
      provide services for people impacted by FASD.

    7. Communities, families and individuals affected by FASD should have
      improved access to appropriate community care and support services across
      education, health, community services, and employment and criminal justice
      sectors.

    8. People with impairments resulting from FASD should have opportunities for
      the fullest possible social integration and individual development.

4 Background: Causes,
Prevalence and Impact of FASD

(a) Alcohol
consumption
  1. Excessive alcohol consumption is an increasing health concern across
    Australia. A report released in 2010, titled The Range and Magnitude of
    Alcohol’s Harm to Others
    , stated that alcohol abuse is costing
    Australia in excess of $20 billion each
    year.[1] The numbers of Australians
    reported to drink at risky and high risk levels has risen from 8% in 1995, to
    13% in 2004-05.[2] This increase has
    been more pronounced in women, where the numbers have doubled from 6% to 12% in
    that timeframe.[3] The highest rates
    of alcohol consumption are in adolescents and young
    adults.[4]

  2. Experts argue that these high rates of alcohol consumption by women of a
    childbearing age are a cause for concern, particularly given the evidence that
    approximately half of all pregnancies are
    unplanned.[5] Furthermore, surveys
    suggest that between 50-59% of women consume alcohol at some stage whilst
    pregnant. In one study, 20% of women indicated that they had participated in
    binge drinking at least once when
    pregnant.[6]
(b) Prevalence of
FASD
  1. Considering these statistics, it is possible that the issues associated with
    alcohol exposure during pregnancy, resulting in FASD, will become an
    increasingly prominent health and well-being concern across all communities in
    Australia and for the Australian community to respond to.

  2. While there has been some important work undertaken to assess the prevalence
    of FASD in identified Aboriginal and Torres Strait Islander communities (see the
    Appendix: A Community Response to Fetal Alcohol Spectrum
    Disorders[7]
    ), the prevalence of
    FASD in Australia has not yet been determined.

  3. The Commission urges the Standing Committee to consider strategies that
    target all people and communities across Australia in the development of a
    national approach to the prevention, intervention and management of FASD.
(c) Impact of FASD
  1. Evidence indicates that FASD may result in a range of impairments including
    brain injury, birth defects, behavioural and mental health issues.

  2. Impaired memory and an inability to learn and retain information may limit
    educational gains and also impact on future employment and opportunities for
    economic participation.

  3. Impaired memory and an inability to learn and retain information may also
    result in a threat to the preservation of Aboriginal and Torres Strait Islander
    Peoples’ cultures, given their oral traditions of passing down cultural
    knowledge through stories and ceremony. It is a real possibility that cultural
    knowledge will be lost as a result of FASD. The majority of cultural knowledge
    is not part of a written history. Therefore, its continuation is reliant upon
    the ability of elders to pass this knowledge on to future generations.

5 A Human
Rights-Based Response to FASD

  1. The Australian Human Rights Commission recommends that a human
    rights-based approach underpin all measures to address FASD in order to protect
    and promote the rights of women, children, families and communities affected by
    FASD.

  2. A human rights-based approach requires integrating the norms, principles,
    standards and goals of the national and international human rights system into
    prevention, intervention and management strategies that address
    FASD.[8]

  3. There are a range of international human rights conventions and declarations
    that need to be considered when responding to FASD including:

    • Universal Declaration of Human Rights

    • Convention on the Rights of Persons with Disabilities (CRPD)
    • Convention on the Elimination of All Forms of Discrimination Against Women
      (CEDAW)

    • International Covenant on Economic, Social and Cultural Rights (ICESCR)
    • Convention on the Rights of the Child (CRC)
    • UN Declaration on the Rights of Indigenous Persons (the
      Declaration)

  4. The human rights standards contained in the Universal Declaration of Human
    Rights and other international human rights instruments should guide the
    prevention, intervention and management strategies that address
    FASD.[9]

  5. It is imperative that human rights principles including equality and
    non-discrimination, participation and empowerment, and accountability are
    applied in any response to FASD.

5.1 Consultation and
partnership

  1. Given the sensitive nature of FASD, prevention, intervention and management
    strategies should be developed in partnership with the people impacted by FASD
    including children and adults with disability, women, families and communities.
    Specifically:

    • The development and implementation of legislation and policies should be
      developed in close consultation with, and actively involve, persons with
      disabilities, including children with disabilities, through their representative
      organisation, in accordance with Convention on the Rights of Persons with
      Disabilities (CRPD) (article 43). Children with disabilities have the right to
      express their views freely on all matters affecting them, their views being
      given due weight in accordance with their age and maturity, on an equal basis
      with other children, and to be provided with disability and age-appropriate
      assistance to realise that right (CRPD, article 7).

    • The right to participate in decision-making is particularly important for
      Indigenous peoples.[10] In
      Australia today, Aboriginal and Torres Strait Islander Peoples do not have
      genuine decision-making authority and power over their lives and futures.
      Governments have a legacy of imposed interventions and the power and
      decision-making authority continues to rest in the hands of
      governments.[11] Furthermore,
      international human rights standards have developed to the point where states
      have obligations to work with Indigenous peoples to implement measures for the
      maintenance, protection, development and transmission of culture and cultural
      knowledge.[12]

  2. The specific application of human rights conventions and principles to
    prevention, intervention, management strategies for FASD is outlined in the
    following sections.

6 Prevention Strategies

6.1 Education and
awareness

  1. Education and community awareness about FASD should be accessible to all
    people, without discrimination, including people with disability, people from
    culturally and linguistically diverse backgrounds, people living in rural and
    remote areas, Indigenous communities, and people with low socio-economic status.

  2. Health education measures should highlight the risks alcohol poses for
    pregnant women. Given the escalation of alcohol consumption during pregnancy a
    population-based approach is advised.

  3. It is also important that young people have access to information and
    education about sexual and reproductive health, and alcohol consumption and its
    dangers.

6.2 Family planning
and maternal health care

  1. Access to adequate, appropriate and affordable health care for women,
    particularly for sexual and reproductive health, is also central to preventing
    and addressing FASD.

  2. Article 12 of the Convention on the Elimination of all forms of
    Discrimination Against Women (CEDAW) states that:

    State parties
    shall take all appropriate measures to eliminate discrimination against women in
    the field of health care in order to ensure, on a basis of equality of men and
    women, access to health care services, including those related to family
    planning.

    State parties shall ensure to women appropriate services in connection with
    pregnancy, confinement and the postnatal period, granting free services where
    necessary, as well as adequate nutrition during pregnancy and lactation.

  3. This is also supported by the Conventions on the Rights of the Child (CRC),
    which states that Australia is obliged to ensure adequate prenatal and postnatal
    health care for mothers (article 24(d)). Under the CRC, Australia is required to
    develop preventive health care, guidance for parents and family planning
    education and services (CRC, article 24).

  4. Furthermore, in emphasising women’s right to health, the Committee on
    Economic Social and Cultural Rights underlines the need for state parties to
    provide a full range of high-quality and affordable health care, including
    sexual and reproductive services. The Committee’s general comment calls
    for state parties to remove all barriers to women’s access to health
    services, education and information, including in the area of sexual and
    reproductive health (GC 14).

7 Intervention Needs and
Management Issues

7.1 Applying a social
model of disability

  1. In accordance with the CRPD, the Commission urges the Committee to adopt a
    social model rather than a medical model of disability in the development of a
    national approach to the intervention and management of FASD.

  2. The social model of disability recognises that “disability is an
    evolving concept and that disability results from the interaction between
    persons with impairments and attitudinal and environmental barriers that hinder
    their full and effective participation in society on an equal basis with
    others,”[13]

  3. The CRPD does not define disability. Article 1, in describing the purpose of
    this Convention states:

    The purpose of the present Convention is to
    promote, protect and ensure the full and equal enjoyment of all human rights and
    fundamental freedoms by all persons with disabilities, and to promote respect
    for their inherent dignity.

    Persons with disabilities include those who
    have long-term physical, mental, intellectual or sensory impairments which in
    interaction with various barriers may hinder their full and effective
    participation in society on an equal basis with others.

  4. As noted in the Terms of Reference of this Inquiry, FASD is “an
    overarching term used to describe a range of cognitive, physical, mental,
    behavioural, learning and developmental disorders” that result from foetal
    exposure to alcohol.

  5. Unlike the medical model of disability, the social model of disability does
    not require a focus on diagnosis to access necessary supports and services and
    programmes to raise awareness. Rather a focus is required on addressing the
    interactions between the impairment and the environment and attitudinal
    barriers that are hindering full and effective participation on an equal basis
    with others.

7.2 Access to support
and services

  1. The CRPD describes in detail the measures required to promote, protect and
    ensure the full and equal enjoyment of all human rights and fundamental freedoms
    by all persons with disabilities, and to promote respect for their inherent
    dignity. These measures include training for health and other professionals,
    early intervention and access to appropriate community care and support services
    across education, health, community services, employment and criminal justice
    sectors for the communities, families and individuals affected by FASD.

  2. The necessary supports and services (including but not limited to health,
    community, education and employment services) should be accessible to all people
    with impairments resulting from FASD, including those in rural and remote areas,
    Aboriginal and Torres Strait Islander communities, culturally and linguistically
    diverse communities, women and people with low socio-economic status.

  3. Importantly, the CRPD notes that to prevent concealment, abandonment,
    neglect and segregation of children with disabilities (which includes children
    with FASD), state parties shall undertake to provide early and comprehensive
    information, services and support to children with disabilities and their
    families (article 23(3)).[14]

  4. The CRC also states that a child with physical and mental disabilities
    should enjoy a full and decent life, in conditions which promote self-reliance
    and facilitate the child’s active participation in the community. This
    includes the right of the disabled child to special care and assistance designed
    to promote the fullest possible social integration and individual development
    (article 23).

7.3 The National
Disability Insurance Scheme

  1. On 17 February 2010, the Australian Government requested the Productivity
    Commission undertake an inquiry into a National Disability Long-Term Care and
    Support Scheme. On 21 July 2011, the Productivity Commission, in its final
    report into Disability Care and Support to the Australian Government
    concluded:[15]

    Current
    disability support arrangements are inequitable, underfunded, fragmented, and
    inefficient and give people with a disability little choice. They provide no
    certainty that people will be able to access appropriate supports when needed.
    While some governments have performed much better than others, and there are
    pockets of success, overall, no disability support arrangements in any
    jurisdiction are working well in all of the areas where change is required. The
    current arrangements cannot be called a genuine ‘system’ in which
    different elements work together to achieve desired outcomes.

    The central message of this report is that a coherent and certain system for
    people with a disability is required — with much more and better-directed
    resourcing, a national approach, and a shift in decision-making to people with a
    disability and their careers. This overview explains what is wrong with the
    current arrangements and how to improve them. It shows how a new system would
    work for people with a disability and their families, and how it would provide
    benefits for the community as a whole.

  2. The Productivity Commission recommended the establishment of two schemes: a
    National Disability Insurance Scheme (for people with significant and ongoing
    disability) and a National Injury Insurance Scheme (for people requiring
    lifetime care and support as a result of catastrophic injuries).

  3. In a summary of the key points of the NDIS, the Productivity Commission
    noted:[16]

    The scheme
    should involve a common set of eligibility criteria, entitlements to
    individually tailored supports based on the same assessment process, certainty
    of funding based on need, genuine choice over how their needs were met
    (including choice of provider) and portability of entitlements across borders.
    There would be local area coordinators and disability support organisations to
    provide grassroots support. The insurance scheme would take a long-term view and
    have a strong incentive to fund cost effective early interventions, and collect
    data to monitor outcomes and ensure efficiency.

  4. Chapter 7 and Recommendations 7.1-7.10 of the Productivity
    Commission’s Final Report focus on assessing care and support needs.
    Recommendation 7.1 states:

    Working within the framework of the
    International Classification of Functioning, Disability and Health (ICF), the
    assessment process undertaken by the NDIA should identify the supports required
    to address an individual’s reasonable and necessary care and support needs
    across a broad range of life activities, and should take account of an
    individual’s aspirations and the outcomes they want to achieve.

  5. In relation to assessment tools, Recommendation 7.8 states:

    The
    NDIS should establish a coherent package of tools (a ‘toolbox’),
    which assessors would employ across a range of disabilities and support needs
    (including planning and active support, attendant care, aids and equipment, and
    home modifications).

  6. The Australian Government has commenced work with State and Territory
    Governments to build the foundations for a National Disability Insurance Scheme
    (NDIS)[17]. The NDIS has the
    potential to transform the way services are funded and delivered, ensuring
    people with significant and ongoing disability, which would include many people
    with FASD, are better supported and have greater choice and control. The NDIS
    will also mean better support for the families and carers of people with
    disability.

8 Fitzroy Valley Case
Study—A Community-Led Response to FASD

  1. Aboriginal and Torres Strait Islander communities are leading the way in
    developing a human right-based response to FASD.

  2. The threat of losing culture was one of the key drivers that led the
    Aboriginal communities in the Fitzroy Valley to identify FASD as an issue of
    concern. The steps taken by these communities to address FASD are outlined in
    detail in the Commission’s Social Justice Report 2010 (see
    the Appendix: A Community Response to Fetal Alcohol Spectrum
    Disorders[18]).

  3. The Fitzroy Valley project is an example of a community-led collaborative
    process to address a highly sensitive community identified issue of concern. A
    strategy to address FASD was developed by local community leaders. The
    comprehensive community consultations were embedded into the fabric of the
    strategy, and there was widespread community support for a FASD prevalence
    study.

  4. The FASD prevalence study will form a key component of the evidence-base to
    advocate for funding and resources to implement remedial projects to address and
    prevent FASD.

  5. The lesson from Fitzroy Valley is clear: when communities are enabled to own
    their own challenges, appropriately supported by governments, they can address
    their most confronting and intractable issues. Strategies to address FASD within
    communities should be community-led and community
    focused.

9 Appendix:
A Community Response to Fetal Alcohol Spectrum Disorders

The following case study is from Section
3.3, Chapter 3 of the Social Justice Report 2010 which is also available online:
http://www.humanrights.gov.au/social_justice/sj_report/sjreport10/chap3.html

When
Aboriginal people are given or take responsibility to address the issues in
their community and can come up with their own solutions you will end up with a
better way of addressing these issues. This is what we did with issues of Fetal
Alcohol Spectrum Disorders and early life trauma in the Fitzroy
Valley.[19]

You all know the destructive impact of alcohol. For many families and
communities in the Kimberley it has been an unmanaged epidemic... The most
insidious element of this evil is that it diminishes the lives of so many of the
unborn. The horrors of Fetal Alcohol Spectrum Disorders are now just beginning
to be understood by Australian
governments.[20]

Excessive alcohol consumption is an increasing health concern across
Australia. A report released in 2010, titled The Range and Magnitude of
Alcohol’s Harm to Others
, stated that alcohol abuse is costing
Australia in excess of $20 billion each
year.[21]

The numbers of Australians reported to drink at risky and high risk levels
has risen from 8% in 1995, to 13% in
2004-05.[22] This increase has been
more pronounced in women, where the numbers have doubled from 6% to 12% in that
timeframe.[23] The highest rates of
alcohol consumption are in adolescents and young
adults.[24] Experts argue that these
high rates of alcohol consumption by women of a childbearing age are a cause for
concern, particularly given the evidence that approximately half of all
pregnancies are unplanned.[25] Furthermore, surveys suggest that between 50-59% of women consume alcohol at
some stage whilst pregnant. In one study, 20% of women indicated that they had
participated in binge drinking at least once when
pregnant.[26]

Considering these statistics, it is possible that the issues associated with
alcohol exposure during pregnancy, resulting in FASD, will become an
increasingly prominent health and wellbeing concern for the Australian community
to respond to.

The people of the Fitzroy Valley have identified FASD as an issue of
particular concern that they want to exert control over addressing.
Paediatricians working in the Kimberley estimate that up to 30% of children in
the Fitzroy Valley are affected by
FASD.[27]

FASD are a set of disorders that may occur when a mother consumes harmful
quantities of alcohol at crucial points during pregnancy and are potentially
100% preventable. The disorders create barriers to normal child development;
including learning and behaviour.

FASD represent a group of permanent disorders caused by exposure of the
unborn child to alcohol consumed by the mother during pregnancy. These disorders
include fetal alcohol syndrome (FAS) and partial FAS, alcohol-related
neurodevelopmental disorder (ARND) and alcohol-related birth defects (ARBD).
Babies exposed to alcohol in utero may be born with deformities of the
brain, nervous system, kidneys, heart, lungs, eyes, ears; may have growth
problems; and may display a series of specific facial characteristics.
Developmental, behavioural and learning problems are common. What is most
devastating about this condition is that it is 100% preventable.

Long term outcomes for children with FASD are poor. Overseas research
suggests that 90% will have mental health problems, 80% will remain unemployed,
60% will come into aggravated contact with the law and less than 10% will be
able to work independently by the age of
21.[28]

Every child, including a child with FASD, has the right to health, happiness
and educational attainment.[29] Children with FASD have complex health, social and educational needs that
require targeted service and policy responses. Exposure to alcohol in the womb
can cause many problems including birth defects, learning difficulties, abnormal
hearing or vision, and behavioural and psychological disorders. The key to
ensuring that affected children are able to reach their full potential, and to
lead happy and healthy lives, is to enable early diagnosis and intervention
using multi-disciplinary assessment. The provision of ongoing family support is
also necessary.[30] It is therefore
imperative that children with FASD – wherever they live in Australia
– have equitable access to the services they need to optimise their
health, development and educational outcomes.

In evidence provided to the Coronial inquest in the Kimberley, Professor
Fiona Stanley referred to the problem of FASD as being ‘another Stolen
Generation’.[31]

Paediatricians in the Kimberley are talking about 1 in 4 children affected by
alcohol in our current cohort of young children. If you are talking about an
Indigenous culture that relies on the maintenance of an oral history and oral
tradition and the ability to pass on that tradition and of knowledge then the
underpinning foundation of that is your memory. And if you can’t remember
things then how our Indigenous people going to pass on their
culture?[32]

The Commission highlights the actions of Fitzroy Valley leaders in addressing
FASD because of their community-ownership over an identified issue of concern.
The FASD project is led by the Fitzroy Valley communities, and where needed, the
skills and expertise of trusted external partners are utilised. Consent
processes are embedded into the fabric of this project to create a
community-wide climate of consent. These key features provide an example of
processes that address sensitive and seemingly intractable issues in an
appropriate and targeted manner. The consequent result borne out of these
processes is a high level of community buy-in and engagement.

(a) Designing
the Fetal Alcohol Spectrum Disorders strategy

FASD has been an issue of concern for Fitzroy Valley residents for some time.
It was discussed at a community meeting on alcohol and other drugs in
2004.[33] However, it took the
advent of the alcohol restrictions to unite the communities into taking action.

FASD had been an issue but with the chronic supply of alcohol you
couldn’t get traction. People did want to know about it. A lot of people
knew something was wrong with our children because of the alcohol. It was after
the restrictions that people were ready. And it started to get traction when it
was explained to the elders that passing on culture to the next generation would
be broken. The elders were concerned about the loss of
culture.[34]

There has been significant recent international focus on the importance of
culture and identity in the development processes of Indigenous
communities.[35] This work builds on
the central importance placed on culture and identity in the United Nations
Declaration on the Rights of Indigenous Peoples
. International human rights
standards have developed to the point where states have obligations to work with
Indigenous peoples to implement measures for the maintenance, protection,
development and transmission of culture and cultural
knowledge.[36]

FASD is a genuine threat to the preservation of the Aboriginal cultures of
the Valley. Impaired memory and an inability to learn and retain information are
major components of FASD. Behavioural and learning problems also limit
educational gains. Given our oral traditions of passing down cultural knowledge
through stories and ceremony, there is a very real possibility that cultural
knowledge will be lost as a result of FASD. The majority of cultural knowledge
is not part of a written history. Therefore, its continuation is reliant upon
the ability of elders to pass this knowledge on to future generations.

In October 2008, just over a year after the alcohol restrictions were brought
into the Fitzroy Valley, members of the communities gathered to discuss FASD and
other alcohol-related problems. The meeting was led by Aboriginal organisations
Marninwarntikura and Nindilingarri Cultural Health Services (Nindilingarri).
Community members voiced their concerns that many children and families were
suffering from the affects of FASD and Early Life Trauma (ELT). ELT is a term
used to describe the environmental factors that can negatively impact on a
child’s development. Poor nutrition, neglect, and exposure to violence and
stress can all lead to ELT. Meeting participants agreed to a multi-pronged
strategy of action to address these challenging
issues.[37]

In November 2008, a coalition of government agencies, business and community
organisations formed a ‘Circle of Friends’. All parties pledged
in-principle support to a FASD/ELT Strategy and action plan. Below is a
diagrammatical representation of the ‘Circle of Friends’:

Figure 3.2: ‘A Circle of Friends’ Figure 3.2: ‘A Circle of Friends’ image

The ‘Circle of Friends’ is a similar model to the Fitzroy Futures
Forum in that it engages all relevant stakeholders from a local, regional and
national level including the Aboriginal organisations of the Valley and
government agencies. All participants are actively involved in the development
and implementation of the FASD/ELT Strategy that was endorsed by the FASD
leadership team.

(i) The
Marulu Project

In November 2008, a draft strategy was developed by the CEO of
Marninwarntikura, June Oscar and Dr James Fitzpatrick, a paediatric trainee
serving the communities. The strategy was called Overcoming Fetal Alcohol
Spectrum Disorders (FASD) and Early Life Trauma (ELT) in the Fitzroy Valley: a
community initiative
. This strategy is now described locally as the Marulu Project. Marulu is a Bunuba word meaning ‘precious, worth
nurturing’.[38]

Nindilingarri is the head of a leadership team guiding the project. The Marulu Project has a number of areas of focus:

  • Prevention – including consulting with the communities to raise
    awareness of the Marulu Project, education across the communities and
    working with women who are pregnant to prevent alcohol use.

  • Diagnosis – including the development of screening and diagnostic
    processes.

  • Support – including mapping the support services in the Valley and
    developing a network of carers.

  • High level dialogue – including strategic use of media, contributing
    to scientific discussions on FASD, and raising the profile of FASD through
    strategic partnerships.

  • Build local capacity – including participation in relevant workshops
    and conferences and capturing the process of the project.

  • Focus resources – identify and leverage existing resources, approach
    government and other funders to secure targeted funding for the strategy, and
    engage local community resources in FASD prevention, support and
    diagnosis.[39]

Below is
a schematic overview outlining the journey in developing the Marulu
Project
.

Figure 3.3: Schematic of the Marulu
Project
[40]
Figure 3.3: Schematic of the Marulu Project Image

Nindilingarri uses the Fitzroy Futures Forum meetings to report to the
communities, government and businesses on the progress of the Marulu
Project
.

FASD was earmarked for a full day discussion at the 2009 Marninwarntikura
Annual Women’s Bush Meeting. The Bush Meeting, attended by the Commission,
included a presentation by Carolyn Hartness, an Eastern Band Cherokee and FASD
consultant from Canada, who has extensive experience working on FASD with
Indigenous communities in the United States and Canada. Carolyn Hartness’
attendance was made possible through a grant from the Fitzroy Futures Fund.

Text Box 3.5: Support for action on FASD from the Women’s Bush
Camp

The women at the Bush Meeting gave their support to community led
approaches to addressing FASD:

We the women at the annual Marninwarntikura Women’s Bush Meeting
(6-10 July at Wamali Springs on Leopold Downs Station) acknowledged that
rebuilding our families and our communities will move forward on the basis of
unity and collaboration.

We have agreed that our priorities over the next 2-3 years are:

  • To raise awareness of FASD and recognize its impact on all aspects of our
    community including loss of cultural knowledge, lack of employment
    opportunities, unaddressed educational needs, impact on the justice system and
    child protection etc. This will require us to create culturally appropriate
    strategies to address these issues. These strategies will be community driven
    and maintained.[41]

The Bush Meeting and the Fitzroy Futures Forum were pivotal platforms for
keeping the people in the Valley, outside of the leadership team, informed and
involved in the development and implementation of the project.

In 2009, the Marulu Project leadership group began discussions with
researchers from the George Institute for Global Health (The George Institute)
about the possibility of conducting a prevalence study of FASD in the Fitzroy
Valley. The rationale for conducting a prevalence study was to understand how
many children were affected by FASD and to attract funding and resources to
manage these children, and prevent FASD. Funding would only be forthcoming once
there was a strong evidence
base.[42]

(b) Working
with trusted partners

In Fitzroy we bring people in when we identify a problem and a need, rather
than people coming in and telling us our problems and our needs. It is about
forming strategic partnerships with government and the corporate sector. It is
about asking for help but that is strategic and targeted
help.[43]

The Marulu Project leadership team, headed by Nindilingarri,
identified The George Institute as the most appropriate organisation to provide
technical and other expertise to the project. The George Institute had
previously developed relationships with the communities in producing a
documentary, Yajilarra. The documentary told the story of alcohol
restrictions in Fitzroy Valley.

Text Box 3.6: Yajilarra: using media as a lever for social
change

The alcohol restrictions campaign in the Fitzroy Valley is a powerful story
that has been told through a documentary film entitled Yajilarra. The
women of Marninwarntikura wanted to use the documentary film as a lever for
social change. They knew that telling this story would raise the profile of the
Fitzroy Valley and alert key players to their continuing needs. The documentary
could also act to inspire other Indigenous communities to take control of the
issues confronting them. It was felt that film was the ideal medium to
communicate the story to the widest audience.

In 2007, June Oscar and Emily Carter from Marninwarntikura invited
Elizabeth Broderick, Sex Discrimination Commissioner (Australian Human Rights
Commission), to visit Fitzroy Crossing. Commissioner Broderick wanted to assist
in making the documentary. Commissioner Broderick introduced the Fitzroy leaders
to The George Institute who assisted in sourcing funding to produce the
film.

The documentary has been instrumental in raising the profile of the Fitzroy
Valley and issues of FASD and securing funding for the Marulu Project.
The documentary has been screened in many places in Australia and
internationally, including Parliament House and at the United Nations.

Yajilarra was a solid foundation for further partnership with The
George Institute:

[O]ut of the liquor restrictions the women formed a relationship with The
George. They assisted the women to produce Yajilarra. There was already
that relationship that existed. As a result of the relationship it was easy for
us to contact them to help with the strategy. Because of the relationship The
George knew about the people they were working with. That is the big difference,
it is always the academics that had seen a problem and tell the people ‘we
are doing it my way’. This is totally different, here the Aboriginal
people said FASD was a problem and we worked with The George Institute on the
project.[44]

The George Institute was a natural partner in the FASD work with
Nindilingarri. The George Institute has expertise in conducting research and in
advocacy and has strong relationships with Fitzroy Valley community members. The
George Institute engaged an expert paediatrician, Professor Elizabeth Elliott
from The University of Sydney, to provide clinical expertise on FASD and sought
approval from the leadership team for her involvement in the
project.[45]

The current research team includes Nindilingarri, The George Institute, and
the Sydney University Medical School at The University of Sydney. Maureen Carter
(community member and CEO of Nindilingarri) leads the team that includes June
Oscar (community member and CEO of Marninwarntikura), Professors Jane Latimer
(The George Institute) and Elizabeth Elliott (Sydney Medical School, The
University of Sydney), Dr Manuela Ferreira (Faculty of Health Sciences, The
University of Sydney) and paediatric senior registrar Dr James Fitzpatrick, who
has been working in the Kimberley for the last two years, and is currently a PhD
student at the Sydney Medical school.

The FASD project is community led research working through partnerships with
trusted external organisations. Indigenous knowledge is acknowledged and
respected in the research process consistent with international human rights
standards.[46] External players are
brought in to provide strategic support.

(c) Community
consent for a prevalence study of Fetal Alcohol Spectrum Disorders

The whole issue with wanting to address FASD had come from the community. We,
as a community, have driven this whole project from the start and will drive it
to the finish. Each step we had engagement with the
people.[47]

The prevalence study is known as the Lililwan Project. Lililwan is a
Kriol word meaning ‘all the little
ones’.[48] The prevalence
study focuses on children in the Valley aged seven and eight years. The entire
study, from the decision to proceed with it through to actual participation,
employs an informed consent process.

The leadership team were committed to the study but they were even more
committed to ensuring a prevalence study was what the community wanted. And that
the community wanted to go ahead with it. We all knew this was really sensitive
stuff and if the time was not right then we were going to stop
it.[49]

The research team was invited to consult with the communities and service
providers in the Fitzroy Valley between 19-23 October 2009. Members of the
consultation team who were not from the Valley undertook cultural awareness
training. The consultations were conducted in a range of formats including
community forums, planned meetings with key stakeholders and informal meetings.
All relevant information about the prevalence study, its aims, methods and
possible outcomes was transmitted to the communities. Importantly, a full
explanation of the possible risks associated with undertaking this research
project was clearly explained. Follow up consultations were had with the Fitzroy
Futures Forum and regional government agencies. This consultation process has
been documented in Marulu: The Lililwan Project Fetal Alcohol Spectrum
Disorder (FASD) Prevalence Study in the Fitzroy Valley: A Community
Consultation
, which includes summaries and recommendations from each of the
consultation sessions.[50]

The consultations showed overwhelming support to proceed with a prevalence
study from all stakeholders, including the Aboriginal communities and service
providers. The widespread feeling was that this study would be an integral
component to addressing FASD in the Valley. The community-led nature of this
project and the continuing engagement through public forums like the Fitzroy
Futures Forum ensured that the residents were kept up to date and were fully
informed about the proposed prevalence study. This was fundamental to obtaining
consent to proceed with the FASD prevalence
study.[51]

The Special Rapporteur on the situation of human rights and fundamental
freedoms of indigenous people (Special Rapporteur), Professor James Anaya, has
noted that the absence of this type of intensive engagement process can derail
programs and projects intended to benefit Indigenous peoples:

The Special Rapporteur has observed that, without the buy-in of indigenous
peoples, through consultation, at the earliest stages of the development of
Government initiatives, the effectiveness of Government programmes, even those
that are intended to specifically benefit indigenous peoples, can be crippled at
the outset. Invariably, it appears that a lack of adequate consultation leads to
conflictive situations, with indigenous expressions of anger and mistrust,
which, in some cases, have spiralled into
violence.[52]

The consultation process for the FASD prevalence study is consistent with a
number of the key standards for consulting with Indigenous peoples under
international law as outlined by the Expert Mechanism on the Rights of
Indigenous Peoples[53] and the
Special Rapporteur:[54]

  1. Consultations are carried out through Indigenous peoples representatives,
    that are chosen by Indigenous peoples themselves
    – The consultations
    were led by the Indigenous members of the research team. The Fitzroy Futures
    Forum which has representatives from each of the four language groups in the
    Fitzroy Valley was also used as a vehicle for consultation.

  2. Consultations should be carried out through ‘appropriate
    procedures’. General public hearings are generally not considered to be
    ‘appropriate procedures’
    The consultations
    involved community forums, as well as planned and informal meetings. Follow up
    consultations were also held.

  3. Consultations should be undertaken in good faith and in the appropriate
    form. This means that consultations are to be conducted with mutual trust and
    transparency
    – Prior to the consultations, cultural awareness training
    was provided to the non-Indigenous participants. The consultation process was
    undertaken over an extended period of time to allow participants the time to
    absorb information about the project. All relevant information was provided
    including potential risks of the research project. The report of the
    consultations process was provided to participants.

  4. Consultations should be in good faith and with the objective to achieve
    agreement or consent
    – At the beginning of the process it was agreed
    that the study would only proceed on the basis of the informed consent of the
    people of the Fitzroy Valley. All parties acted in good faith.

  5. There should be periodic evaluation of effectiveness – The
    project ensures that evaluations will occur at each stage of the research.

This research project is setting an example to the rest of
Australia of how best to approach Indigenous affairs. A process guided by a
relationship underpinned by meaningful, respectful engagement and collaboration
will always be more effective and successful than one that is not. Harnessing
this way of thinking and operating opens a myriad of opportunities to address
difficult and sensitive issues in Aboriginal and Torres Strait Islander
communities.

Having received informed consent to proceed with the project, the research
team set out designing the study. Associate Professor Jane Latimer of The George
Institute, described this process:

So then we started to design the study with the community. We would
teleconference each week and we would design it a bit more. From our end we had
ethics committees to go
through.[55]

Maureen Carter, CEO of Nindilingarri and community member, outlined her
perspective of the project’s development:

We would look at information given to us by The George Institute but we could
sit with them to change the words to make it culturally appropriate. We put the
research into our context but it still had to fit within the ethical guidelines
of The George.[56]

The project is designed to incorporate necessary elements of Indigenous
culture and knowledge as well as meeting the requirements of Western research
ethics standards. For example, the parent/carer questionnaire developed by
Professor Elliott and Dr Fitzpatrick was modified extensively following
consultations with Fitzroy Valley residents and the Kimberley Interpreting
Service to ensure its content and language were culturally
appropriate.[57]

The Lililwan Project is guided by a set of principles and
preconditions that are relevant to each phase of the project. These are:

Principles

  1. First, do no harm.

  2. Commit to a process of two-way learning.

  3. All activity must deliver short and longer term benefits for the
    communities.

  4. Informed participation and consent must be ensured through the sharing of
    information and knowledge.

  5. All activities must preserve the dignity of participating individuals and
    communities.

Preconditions

  1. Clear and broad informed consent from:

    • the communities broadly

    • local service providers.
  2. Local Control – The Project Leadership Team must be, and perceived to
    be by the communities as being, in control of the study.

  3. An appropriate and adequate
    workforce.[58]

The
project was divided into two discrete stages to ensure that the communities are
comfortable with the sensitive process:

Stage 1. Collection of demographic, prenatal, and early childhood data
from parents/carers using a diagnostic checklist and review of medical records.
This involves interviews with parents/carers including questions on the drinking
patterns of mothers during pregnancy and the development patterns of
children.

Stage 2. Health and developmental screening, opportunistic treatment
and referral. This includes medical and allied health examinations of all
children born in 2002 and 2003 to estimate the prevalence of
FASD.[59]

This study will provide an individual assessment of children and estimate the
prevalence of FASD in the Valley. The data from the project will stay with the
Kimberley Population Health Unit. The study was designed so that it did not
simply diagnose children and leave them in limbo. A care plan will be developed
for every child with identifiable problems and ensure they are referred for
appropriate and ongoing care. The study will also use the principal findings to
advocate for better health and education services. The evidence-base generated
can be used by governments to develop a targeted service response to FASD in the
Fitzroy Valley.[60]

(ii) Continuing
consent in action

Ongoing consent is a precondition of the Lililwan Project. Therefore,
all participants in the study are to give their informed consent throughout the
life of the project and before any new developments are undertaken.

In April 2010, the research team began Stage 1 of the Lililwan
Project
. This involved interviews with mothers and carers of seven and eight
year old children in the Valley. The cohort for the study was located using the
data from the Fitzroy Population Project. The research team was led by
two ‘community navigators’:

We had Aboriginal navigators to help locate the people. These navigators were
chosen because of their standing in the community. We had a male and a female
navigator, so it was culturally appropriate. Going in with people who know the
community meant we gave the researchers information about the families that
might be relevant. You know if there had been a loss. The project was done at
the pace of the community and that is key. We met with the right significant
people in each community first. The researchers were led by the community
navigators.[61]

The use of the navigators was an essential component of the continuing
consent process. Most of the interviews were conducted by the navigators in
conjunction with Dr James Fitzpatrick and Ms Meredith Kefford, a volunteer with
Indigenous Community Volunteers, who were both well known in the Fitzroy
Valley.

Even though Nindilingarri had been given a strong mandate to proceed with the Lililwan Project from the community consultations, obtaining the informed
consent from individual families was a fundamental component of Stage 1.

Women are giving you the most sensitive data in the information they provide
as part of this research. This information is so incredibly sensitive in
relation to terminations of pregnancies, in relation to drug and alcohol use. It
is the most sensitive data in their lives. We wanted to make sure no one was
coerced in any way.[62]

The consent processes were embedded into the fabric of the project. Consent
was sought at every step of the project to ensure participants were not being
coerced or did not understand what their involvement entailed.

We wanted to make absolutely sure we were not coercing people in any way,
shape or form. So we organised for a senior partner from Blake Dawson to travel
with us to be an independent expert in consent and made sure he thought the way
we were storing the data and gaining consent from people was the best practice
we could have and there was nothing more we could do. It meant there was no risk
of coercing people.[63]

When the researchers went out into the communities they would go in and have
a barbeque and get introduced to the community by the navigators. With this
issue [FASD and drinking alcohol during pregnancy] our people will not talk
straight away, they have to get to know you. They have to have time to think
about these things before they said yes or no to be involved in the research. We
gave them time to think.[64]

As with any research project, the Research Team had to apply for permission
from an identified human research ethics committee to conduct the study and to
have the study design, parent information sheet, consent form, questionnaire and
clinical assessment process approved.

In the case of the Lililwan Project this involved not only the
University ethics committee (University of Sydney Human Research Ethics
Committee) but also the relevant committee in Western Australia
(Western Australia Country Health Service Board Research Ethics Committee) and
the Western Australian Aboriginal Health Information & Ethics
Committee. In addition, all research conducted in the Kimberley must be
approved by the Kimberley Research Subcommittee of the Kimberley Aboriginal
Health Planning Forum.[65] This
committee was established in 2006 to ensure that research conducted in the
region that might include Indigenous peoples was coordinated, that the
people of the Kimberley would derive the maximum possible benefit from any
research conducted there, and that any adverse impact of the research on either
the community or its health services would be kept to a
minimum.[66] Each part of the Liliwan Project will go through this arduous – but absolutely
essential and extremely helpful –
process.[67]

Data collection for Stage 1 was completed by the end of August 2010.

The success of the Lililwan Project so far is testimony to the careful
investment in partnership, consultation, negotiation and consent.

So now we have completed Stage 1 and we know that the entire population of
children born in 2002 or 2003 across the Valley is approximately 138 children.
Of these, we were able to access and contact 132 and 95% of them gave their
permission to be interviewed. So we know that the data we will have is
representative of the entire
population.[68]

In addition to high participation rates, the Research Team reports that Stage
1 of the project has produced high quality
data.[69]

Although we haven’t measured it specifically we know that when we
travel around people have a level of knowledge about FASD. You don’t need
to start explaining from the start. The community has a level of knowledge that
if we had been there three years ago they would not have
had.[70]

The community driven nature of the Lililwan Project, with consent
processes embedded into its fabric, provides strong evidence that, when
empowered to do so, Indigenous communities can address their most sensitive and
difficult issues.

(iii) Assessing
the prevalence of FASD and developing appropriate response

Data collection for Stage 2 of the project will commence in May 2011 led by
clinicians from the Discipline of Paediatrics and Child Health Care at Sydney
Medical School, Sydney University. It will see a comprehensive multidisciplinary
health and developmental assessment of all children. This will include physical
and cognitive assessments of the children. It will identify the functionality of
each child and to indicate what health and educational support structures will
be needed for each FASD affected child. In other words it will create
individually targeted management plans. This Stage will be complete by the end
of 2011.

The George Institute obtained philanthropic funding for the initial
consultations and Stage 1. Nindilingarri, The George Institute and The
University of Sydney actively sought government funding for Stage 2. In July
2010, the Minister for Families, Housing, Community Services and Indigenous
Affairs (Minister for Indigenous Affairs) and the Minister for Indigenous Health
jointly announced that the Australian Government would support Stage 2 of the Lililwan Project with a $1million grant to the research
collaboration.[71] This will support
approximately half the cost of the project.

This project is considered to be one of the many positive developments
emerging out of the Fitzroy Valley since the alcohol restrictions.

(d) Concluding
observations on the Fitzroy experience

A community approach to Fetal Alcohol Spectrum Disorders

  • The Fitzroy Valley communities considered that Fetal Alcohol Spectrum
    Disorders (FASD) was an area of concern because of its genuine threat to the
    health and well-being of local children, its threat to the preservation of
    culture and the damage it would cause to future generations.

  • The FASD project is an example of a community-led collaborative process to
    address a highly sensitive community identified issue of concern.

  • A strategy to address FASD was developed by local community leaders. The
    lead partner is the Nindilingarri Cultural Health Service at Fitzroy Crossing.
    Other key partners are The George Institute for Global Health, The Sydney
    Medical School of the University of Sydney and paediatricians working in the
    region.

  • Nindilingarri Cultural Health Service is the lead agency with responsibility
    to work with partners to develop the FASD strategy design.

  • The Fitzroy Futures Forum keeps the communities informed about all work on
    FASD and provides an opportunity for local people to have input into the project
    and provide consent and feedback at key points of its progress.

  • Comprehensive community consultations demonstrated widespread community
    support for a FASD prevalence study.

  • The FASD prevalence study will form a key component of the evidence base to
    advocate for funding and resources to implement remedial projects to address and
    prevent FASD.

  • The FASD prevalence study is a community led model for project development,
    engagement and consent processes.

  • Careful investment in communication and consent processes ensured that 95%
    of families in the Fitzroy Valley with children aged seven and eight years
    consented to participate in the study.

[1] AM Laslett, P Catalano, T
Chikritzhs, C Dale, C Doran, J Ferris, T Jainullabudeen, M Livingston, S
Matthews, J Mugavin, R Room, M Schlotterlein and C Wilkinson, The Range and
Magnitude of Alcohol’s Harm to Others
, Alcohol Education and
Rehabilitation Foundation (2010), p 177. At http://www.aerf.com.au/Harm_to_Others_Full_Report_with-errata.pdf (viewed 10 September 2010).
[2] L
Burns, E Black and E Elliott (eds), Fetal Alcohol Spectrum Disorders in
Australia: An Update
, Intergovernmental Committee on Drugs: Working Party on
Fetal Alcohol Spectrum Disorders (2009),
p
18.
[3] L Burns, E Black and E
Elliott (eds), Fetal Alcohol Spectrum Disorders in Australia: An Update,
Intergovernmental Committee on Drugs: Working Party on Fetal Alcohol Spectrum
Disorders (2009),
p 18.
[4] L
Burns, E Black and E Elliott (eds), Fetal Alcohol Spectrum Disorders in
Australia: An Update
, Intergovernmental Committee on Drugs: Working Party on
Fetal Alcohol Spectrum Disorders (2009),
p
19.
[5] L Burns, E Black and E
Elliott (eds), Fetal Alcohol Spectrum Disorders in Australia: An Update,
Intergovernmental Committee on Drugs: Working Party on Fetal Alcohol Spectrum
Disorders (2009), p 19.
[6] See L
Burns, E Black and E Elliott (eds), Fetal Alcohol Spectrum Disorders in
Australia: An Update
, Intergovernmental Committee on Drugs: Working Party on
Fetal Alcohol Spectrum Disorders (2009), p
20.
[7] NB: This submission adopts
the English (UK) spelling of ‘foetal’ whereas the case study used ‘fetal’ as it was aligned with terminology used by the Lililwan
Project in the Fitzroy Valley prevalence study.
[8] Kirkemann Boesen, J and
Martin, T, Applying a Rights-Based Approach: An Inspirational Guide for Civil
Society,
The Danish Institute for Human Rights (2007)
[9] See for example: The Human
Rights Based Approach – Statement of Common Understanding. Developed at
the Inter-Agency Workshop on a human rights-based approach in the context of UN
reform, 3 to 5 May 2003. Available at http://www.google.com.au/url?sa=t&rct=j&q=kofi%20annan%20human%20rights%20based%20approach&source=web&cd=1&ved=0CCUQFjAA&url=http%3A%2F%2Fwww.unicef.org%2Fsowc04%2Ffiles%2FAnnexB.pdf&ei=X5wnT6beBayUiAf1uYDSAg&usg=AFQjCNHvQbIx_H72TCqHM9tyQGg7Ncy13w;
Kirkemann Boesen, J and Martin, T, Applying a Rights-Based Approach: An
Inspirational Guide for Civil Society,
The Danish Institute for Human Rights
(2007)
[10] The importance of
the right to participation in decision-making for Indigenous peoples is
reflected through its consistent reference in the United Nations Declaration
on the Rights of Indigenous Peoples
, GA Resolution 61/295 (Annex), UN Doc
A/RES/61/295 (2007), articles 3-5, 10-12, 14, 15, 17-19, 22, 23, 26-28, 30-32,
36, 38, 40 and 41. At http://www.un.org/esa/socdev/unpfii/en/drip.html (viewed 10 October 2011). See also Expert Mechanism on the Rights of Indigenous
Peoples, Progress Report on the study on Indigenous peoples and the right to
participate in decision-making,
Report to the Human Rights Council, 15th
session, UN Doc A/HRC/15/35 (2010), paras
7-41.
[11] D Smith and J Hunt, Do They Get It? Indigenous Governance: The Research Evidence and
Possibilities for a Policy Dialogue with Australian Governments
(Speech
delivered at the National Indigenous Policy Dialogue Conference, University of
New South Wales, Sydney, 18-19 November 2010). At http://nipdc.arts.unsw.edu.au/assets/Powerpoints/Smith_Hunt.pdf (viewed 10 October 2011).
[12]United Nations Declaration on the Rights of Indigenous Peoples, GA
Resolution 61/295 (Annex), UN Doc A/RES/61/295 (2007), arts 11, 12, 13, 31. At http://www.un.org/esa/socdev/unpfii/en/drip.html (viewed 31 August 2009).
[13] CRPD, Preamble (e)
[14] CRPD.
Article 23(3). States parties shall ensure that children with disabilities have
equal rights with respect to family life. With a view to realizing these rights,
and to prevent concealment, abandonment, neglect and segregation of children
with disabilities, states parties shall undertake to provide early and
comprehensive information, services and support to children with disabilities
and their families.
[15] Productivity Commission, Disability Care and Support, Productivity Commission
Inquiry Report, Overview and recommendations, No.54, 31 July 2011. Available at
http://www.pc.gov.au/__data/assets/file/0014/111317/disability-support-overview-booklet-word.zip
[16]Disability Care and
Support
p. 2. Available at: http://www.pc.gov.au/__data/assets/pdf_file/0014/111272/disability-support-overview-booklet.pdf
[17]http://www.ndis.gov.au/
[18] NB: This submission adopts
the English (UK) spelling of ‘foetal’ whereas the case study used ‘fetal’ as it was aligned with terminology used by the Lililwan
Project in the Fitzroy Valley prevalence study.
[19] M Carter, community member
and CEO of Nindilingarri, meeting with the Aboriginal and Torres Strait Islander
Social Justice Commissioner, 2 August
2010.
[20] J Oscar, community
member and CEO of Marninwarntikura, East Kimberley achievements award
speech
(Speech delivered 19 September 2009), p
2.
[21] AM Laslett, P Catalano, T
Chikritzhs, C Dale, C Doran, J Ferris, T Jainullabudeen, M Livingston, S
Matthews, J Mugavin, R Room, M Schlotterlein and C Wilkinson, The Range and
Magnitude of Alcohol’s Harm to Others
, Alcohol Education and
Rehabilitation Foundation (2010), p 177. At http://www.aerf.com.au/Harm_to_Others_Full_Report_with-errata.pdf (viewed 10 September 2010).
[22] L Burns, E Black and E Elliott (eds), Fetal Alcohol Spectrum Disorders in
Australia: An Update
, Intergovernmental Committee on Drugs: Working Party on
Fetal Alcohol Spectrum Disorders (2009), p
18.
[23] L Burns, E Black and E
Elliott (eds), Fetal Alcohol Spectrum Disorders in Australia: An Update,
Intergovernmental Committee on Drugs: Working Party on Fetal Alcohol Spectrum
Disorders (2009), p 18.
[24] L
Burns, E Black and E Elliott (eds), Fetal Alcohol Spectrum Disorders in
Australia: An Update
, Intergovernmental Committee on Drugs: Working Party on
Fetal Alcohol Spectrum Disorders (2009), p
19.
[25] L Burns, E Black and E
Elliott (eds), Fetal Alcohol Spectrum Disorders in Australia: An Update,
Intergovernmental Committee on Drugs: Working Party on Fetal Alcohol Spectrum
Disorders (2009), p 19.
[26] See
L Burns, E Black and E Elliott (eds), Fetal Alcohol Spectrum Disorders in
Australia: An Update
, Intergovernmental Committee on Drugs: Working Party on
Fetal Alcohol Spectrum Disorders (2009), p
20.
[27] J Latimer, E Elliott, J
Fitzpatrick, M Ferreira, M Carter, J Oscar and M Kefford (eds), Marulu The
Lililwan Project Fetal Alcohol Spectrum Disorders (FASD) Prevalence Study in the
Fitzroy Valley: A Community Consultation
, The George Institute for Global
Health (2010), p 6.
[28] J
Latimer, E Elliott, J Fitzpatrick, M Ferreira, M Carter, J Oscar and M Kefford
(eds), Marulu The Lililwan Project Fetal Alcohol Spectrum Disorders (FASD)
Prevalence Study in the Fitzroy Valley: A Community Consultation
, The George
Institute for Global Health (2010), p
5.
[29]Convention on the
Rights of the Child
, 1989, preambular para 6, arts 23, 24, 25, 28, 29. At http://www2.ohchr.org/english/law/crc.htm (viewed 15 September 2010).
[30] E Elliott, J Payne, A Morris, E Haan and C Bower, ‘Fetal alcohol syndrome:
a prospective national surveillance study’ (2008) 93 Archives of
Disease in Childhood
732.
[31] A Hope, State Coroner
of Western Australian, Coronial inquest into 22 deaths in the Kimberley, Ref No: 37/07, Coroner’s Court of Western Australia (2008), p
14.
[32] J Ross, community
member, in Yajilara (Directed by M Hogan, Reverb, 2009),
16:34.
[33] E Carter, community
member and Chair of Marninwarntikura, meeting with the Aboriginal and Torres
Strait Islander Social Justice Commissioner, Fitzroy Crossing, 2 August
2010.
[34] E Carter, community
member and Chair of Marninwarntikura, meeting with the Aboriginal and Torres
Strait Islander Social Justice Commissioner, Fitzroy Crossing, 2 August
2010.
[35] See Permanent Forum on
Indigenous Issues, Report of the ninth session, UN Doc E/C.19/2010/15
(2010), paras 4-35. At http://www.un.org/esa/socdev/unpfii/documents/E_2010_43_EN.pdf (viewed 31 August 2010).
[36]United Nations Declaration on the Rights of Indigenous Peoples, GA
Resolution 61/295 (Annex), UN Doc A/RES/61/295 (2007), arts 11, 12, 13, 31. At http://www.un.org/esa/socdev/unpfii/en/drip.html (viewed 31 August 2009).
[37] J
Latimer, E Elliott, J Fitzpatrick, M Ferreira, M Carter, J Oscar and M Kefford
(eds), Marulu The Lililwan Project Fetal Alcohol Spectrum Disorders (FASD)
Prevalence Study in the Fitzroy Valley: A Community Consultation
, The George
Institute for Global Health (2010).
[38] J Latimer, E
Elliott, J Fitzpatrick, M Ferreira, M Carter, J Oscar and M Kefford (eds), Marulu The Lililwan Project Fetal Alcohol Spectrum Disorders (FASD)
Prevalence Study in the Fitzroy Valley: A Community Consultation
, The George
Institute for Global Health (2010), p
vi.
[39] J Latimer, E Elliott, J
Fitzpatrick, M Ferreira, M Carter, J Oscar and M Kefford (eds), Marulu The
Lililwan Project Fetal Alcohol Spectrum Disorders (FASD) Prevalence Study in the
Fitzroy Valley: A Community Consultation
, The George Institute for Global
Health (2010), pp
23-24.
[40] The
Marulu project team: M Carter, J Oscar, E Elliott, J Latimer, J
Fitzpatrick, M Ferreira, M
Kefford.
[41] J Latimer, E
Elliott, J Fitzpatrick, M Ferreira, M Carter, J Oscar and M Kefford (eds), Marulu The Lililwan Project Fetal Alcohol Spectrum Disorders (FASD)
Prevalence Study in the Fitzroy Valley: A Community Consultation
, The George
Institute for Global Health (2010) pp
28-29.
[42] J Latimer, The George
Institute, meeting with the Office of the Aboriginal and Torres Strait Islander
Social Justice Commissioner, Sydney, 22 July
2010.
[43] J Oscar, community
member and CEO of Marninwarntikura, meeting with the Aboriginal and Torres
Strait Islander Social Justice Commissioner, Broome, 3 August
2010.
[44] M Carter, community
member and CEO of Nindilingarri, meeting with the Aboriginal and Torres Strait
Islander Social Justice Commissioner, Fitzroy Crossing, 2 August
2010.
[45] J Latimer, The George
Institute, meeting with the Office of the Aboriginal and Torres Strait Islander
Social Justice Commissioner, Sydney, 22 July
2010.
[46] See T Calma,
Aboriginal and Torres Strait Islander Social Justice Commissioner, Native
Title Report 2008
, Australian Human Rights Commission (2009), ch 7. At http://www.humanrights.gov.au/social_justice/nt_report/ntreport08/chapter7.html (viewed 12 August 2010).
[47] M
Carter, community member and CEO of Nindilingarri, meeting with the Aboriginal
and Torres Strait Islander Social Justice Commissioner, Fitzroy Crossing, 2
August 2010.
[48] J Latimer, E
Elliott, J Fitzpatrick, M Ferreira, M Carter, J Oscar and M Kefford (eds), Marulu The Lililwan Project Fetal Alcohol Spectrum Disorders (FASD)
Prevalence Study in the Fitzroy Valley: A Community Consultation
, The George
Institute for Global Health (2010), p
vi.
[49] J Latimer, The George
Institute, meeting with the Office of the Aboriginal and Torres Strait Islander
Social Justice Commissioner, Sydney, 22 July
2010.
[50] J Latimer, E Elliott,
J Fitzpatrick, M Ferreira, M Carter, J Oscar and M Kefford (eds), Marulu The
Lililwan Project Fetal Alcohol Spectrum Disorders (FASD) Prevalence Study in the
Fitzroy Valley: A Community Consultation
, The George Institute for Global
Health (2010).
[51] J
Latimer, The George Institute, meeting with the Office of the Aboriginal and
Torres Strait Islander Social Justice Commissioner, Sydney, 22 July
2010.
[52] J Anaya, Report of
the Special Rapporteur on the situation of human rights and fundamental freedoms
of indigenous people, James Anaya
, Report to the Human Rights Council, 12th
session, UN Doc A/HRC/12/34 (2009), para 36. At http://unsr.jamesanaya.org/PDFs/Annual2009.pdf (viewed 9 August 2010).
[53] Human Rights Council, Progress report on the study on indigenous peoples and
the right to participate in decision-making: Report of the Expert Mechanism on
the Rights of Indigenous Peoples
, Report to the Human Rights Council,
15th session, UN Doc A/HRC/15/35 (2010), paras 21-25. At http://www2.ohchr.org/english/bodies/hrcouncil/docs/15session/A.HRC.15.35_en.pdf (viewed 23 September 2010).
[54] J Anaya, Report of the Special Rapporteur on the situation of human rights
and fundamental freedoms of indigenous people, James Anaya
, Report to the
Human Rights Council, 12th session UN Doc A/HRC/12/34 (2009), paras 36-57. At http://unsr.jamesanaya.org/PDFs/Annual2009.pdf (viewed 9 August 2010).
[55] J
Latimer, The George Institute, meeting with the Office of the Aboriginal and
Torres Strait Islander Social Justice Commissioner, Sydney, 22 July
2010.
[56] M Carter, community
member and CEO of Nindilingarri, meeting with the Aboriginal and Torres Strait
Islander Social Justice Commissioner, Fitzroy Crossing, 2 August
2010.
[57] E Elliott, Sydney
Medical School, The University of Sydney, meeting with the Office of the
Aboriginal and Torres Strait Islander Social Justice Commissioner, Sydney, 25
October 2010.
[58] J Latimer, E
Elliott, J Fitzpatrick, M Ferreira, M Carter, J Oscar and M Kefford (eds), Marulu The Lililwan Project Fetal Alcohol Spectrum Disorders (FASD)
Prevalence Study in the Fitzroy Valley: A Community Consultation
, The George
Institute for Global Health (2010), pp
17-18.
[59] Nindilingarri
Cultural Health Services, Marulu Update Report 1/2010 (2010).
[60] E Elliott, Sydney
Medical School, The University of Sydney, meeting with the Office of the
Aboriginal and Torres Strait Islander Social Justice Commissioner, Sydney, 25
October 2010.
[61] M Carter,
community member and CEO of Nindilingarri, meeting with the Aboriginal and
Torres Strait Islander Social Justice Commissioner, Fitzroy Crossing, 2 August
2010.
[62] J Latimer, The George
Institute, meeting with the Office of the Aboriginal and Torres Strait Islander
Social Justice Commissioner, Sydney, 22 July
2010.
[63] J Latimer, The George
Institute, meeting with the Office of the Aboriginal and Torres Strait Islander
Social Justice Commissioner, Sydney, 22 July
2010.
[64] M Carter, community
member and CEO of Nindilingarri, meeting with the Aboriginal and Torres Strait
Islander Social Justice Commissioner, Fitzroy Crossing, 2 August
2010.
[65] See Kimberley
Aboriginal Medical Services Council, Kimberley Aboriginal Health Planning Forum, http://www.kamsc.org.au/research/kahpf.html (viewed 28 October 2010).
[66] Kimberley Aboriginal Medical Services Council, Kimberley Aboriginal Health
Planning Forum, http://www.kamsc.org.au/research/kahpf.html (viewed 28 October 2010).
[67] E
Elliott, Sydney Medical School, The University of Sydney, meeting with the
Office of the Aboriginal and Torres Strait Islander Social Justice Commissioner,
Sydney, 25 October 2010.
[68] J
Latimer, The George Institute, interview with the Office of the Aboriginal and
Torres Strait Islander Social Justice Commissioner, Sydney, 22 July
2010.
[69] J Latimer, The George
Institute, interview with the Office of the Aboriginal and Torres Strait
Islander Social Justice Commissioner, Sydney, 22 July
2010.
[70] J Latimer, The George
Institute, interview with the Office of the Aboriginal and Torres Strait
Islander Social Justice Commissioner, Sydney, 22 July
2010.
[71] The Hon J Macklin MP,
Minister for Families, Housing, Community Services and Indigenous Affairs and
The Hon W Snowden MP, Minister for Indigenous Health, ‘Foetal Alcohol
Spectrum Disorder study’, (Media Release 17 July 2010). At http://www.jennymacklin.fahcsia.gov.au/mediareleases/2010/Pages/foetal_alcohol_study_17july10.aspx (viewed 10 August 2010).