DSM-5
Development of a policy
response for the
Helping Children with Autism
(HCWA) package
Final report on the consultations
held 28 June to 30 July 2013
Contents
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Contents …………..……………………………………..…..………….
2
Background ……………………………………………….…..……….
3
Consultation Process ……………………………………….……......
4
Capital City Forums ……………………….…………………………..
4
National Expert Workshop ……………………………….….………..
4
Outcomes of Capital City Forums…………….………….………..….
5
State/Territory - Specific Issues .…………………….……………….
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Outcomes of National Expert Workshop ………….……………..…
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Policy Options ……………………………………………………………
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Other Issues: ………………….………………………..…….…………..
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Attachments:
HCWA Interim Policy - Attachment A ………….………………...……
17
DSM-5 Consultation Schedule - Attachment B………………..…..
18
List of Forum Participants - Attachment C……….…..…………….....
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List of National Expert Workshop Participants - Attachment D…....
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2
Background:
The Diagnostic and Statistical Manual of Mental Disorders (DSM) is published by the
American Psychiatric Association. The fifth edition of the DSM, the DSM-5, was
released on 18 May 2013 and replaces the fourth edition, the DSM-IV, which was
used widely as the diagnostic criteria for Autism Spectrum Disorder (ASD) by health
professionals in Australia.
The DSM-5 consolidates the following diagnoses under DSM-IV; Autism Disorder,
Asperger’s Disorder, Child Communicative Disorder and Pervasive Developmental
Disorder Not Otherwise Specified (PDD-NOS); into one ASD. The three symptom
domains currently under the DSM-IV (i.e. Social Impairment, Speech/
Communication Deficits and Language Delay, and Repetitive Behaviours and
Restricted Interests) become two (i.e. Social/Communication Deficits and Fixated
Interests and Repetitive Behaviours).
Further distinctions are made according to 3 severity levels (1. requires support; 2.
requires substantial support; 3. requires very substantial support). In addition, the
DSM-5 removes Rett’s Disorder and adds a new diagnostic category of Social
Communication Disorder (SCD).
These changes may narrow the diagnosis of ASD relative to the DSM-IV with
potentially fewer children meeting the criteria for ASD under the DSM-5. Estimates of
the number of children that may be diagnosed differently have ranged between 1050%, however more recent studies indicate that it may be closer to between 10-15%.
This has implications for access to programs and services, including the Helping
Children with Autism (HCWA) package, and consequently on the funding and
support available to families.
In order to fully examine the impact of the DSM-5 on access to the HCWA package,
the former Minister for Families, Community Services and Indigenous Affairs, the
Hon Jenny Macklin MP, requested the then Department of Families, Housing,
Community Services and Indigenous Affairs to undertake consultations with key
stakeholders about the adoption of the DSM-5 in Australia to assist in developing an
appropriate policy response.
Given the timing of the introduction of the DSM-5, an interim policy response
regarding eligibility for HCWA was needed while this consultation process was
undertaken. This interim response removes specific reference to the diagnostic
manual from the HCWA Operational Guidelines. Instead, eligibility is based on
the expert advice of a qualified and approved diagnostician. This approach will
maintain, in principle, the current scope of the program.
Further details about the interim policy are outlined at Attachment A.
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DSM-5 Consultation process:
The consultation process has occurred in two phases: a round of capital city forums
with local state and territory stakeholders; followed by a national forum with national
stakeholders and representatives.
Discussion at the consultations centred around the following questions:
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What is the initial reaction to the DSM-5 and its likely adoption in
Australia?
What will be the process for its adoption in Australia?
What are the significant implications of its adoption?
How will the changes impact on government programs and policies?
How should governments respond to these changes and their impact?
Capital City Forums:
Consultations were held in each of the state and territory capital between 28 June
2013 and 24 July 2013. A schedule of the forums is at Attachment B. The forums
involved Commonwealth, state and territory government departments,
diagnosticians, researchers, service providers and consumer representatives. A list
of participants for each forum is at Attachment C.
National Expert Workshop:
The capital city forums culminated in a National Expert Workshop in Melbourne
on 30 July 2013. The purpose of this workshop was to review the outcomes of
the capital city forums and discuss the strengths and weaknesses of possible
policy options to address the implications of the DSM-5 for the HCWA package.
The outcomes of this Workshop will assist the Department of Social Services
(DSS) to develop advice to government about future policy decisions on
eligibility to the HCWA package. A list of participants for the National Expert
Workshop is at Attachment D.
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Outcomes of Capital City Forums:
The following is a summary of the responses from the capital city forums
against the questions posed at the consultations:
1) What is the initial reaction to the DSM-5 and its likely adoption in
Australia?
Summary of Key Points:
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Mixed overall, but quietly positive from the technical diagnostic
perspective in the ASD space.
Sensory input criterion welcomed.
Importance of social context was a positive introduction.
Some concern about severity levels e.g. further guidelines on
application, how they will be used, changes in diagnosis over
time.
SCD is untested.
Reactions were mixed with many believing the DSM-5 makes significant
improvements, while others expressed concern that the DSM-5 suffers
from trying to serve too many purposes e.g. research, clinical diagnosis,
access to services.
DSM-5 will result in better consistency and rigour.
Children with high functioning ASD or Asperger’s are still likely to get a
diagnosis of ASD. Children with PDD-NOS more likely to get a
diagnosis of SCD.
Research shows that even high functioning individuals with ASD have
poor outcomes.
Children under two years of age likely to be disadvantaged under the
DSM-5, as diagnosis will not be as evident in the younger years, in
particular, repetitive behaviours are harder to pick up in younger
children, especially females.
Level of severity of ASD is untested and there is some reluctance to tie
a diagnosis to level of severity in any formal way.
Children can get stuck with a severity level. At different points of their
lives, the severity level will change. Severity levels can also be
contextual i.e. home or school or playground.
Severity levels do not change the diagnosis and underlying issues that
require support.
DSM-5 states that severity levels are temporary and must not determine
level of support.
Families are always asking “where is my child on the spectrum?” Level
of severity will help to answer these questions.
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SCD is new and not derived from empirical evidence. Until it is used and
misused we will not know how widely it will be adopted.
Significant support for the addition of the diagnosis for SCD, as many
children previously misdiagnosed with ASD did not have repetitive
behaviours. Difficulties were in the social communication domain.
SCD a useful disorder as without repetitive behaviours it provides for a
distinct group.
SCD can sometimes be dependent on the environment, so diagnosis
can be difficult.
It is highly probably that SCD will not be diagnosed until the child has
turned four or five. Late diagnosis.
SCD will only be diagnosed once ASD has been ruled out. It will need a
multidisciplinary approach.
PDD-NOS is really SCD, without the repetitive behaviours.
Rett’s Disorder is now considered a medical condition and its removal
from the DSM-5 is appropriate.
Shift to DSM-5 could result in diagnostic shopping.
Diagnosticians will, as always been the case, use their best judgement.
The DSM-5 is more of interest to researchers than it is to clinicians.
The inclusion of hyper or hypo-reactivity to sensory input a very
welcomed addition to the DSM-5.
DSM-5 more likely to pick up girls, now that reactivity to sensory input
has been included.
View that in the US diagnosticians are pushing strongly for the ICD-10
to become the standard diagnostic manual.
2) What will be the process for its adoption in Australia?
Summary of Key Points:
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No formal Australia-wide process for adoption.
Over time, the DSM-5 will replace the DSM-IV as the
diagnostic and research standard in Australia.
The DSM-5 is already being used by some practitioners
including state funded services.
Institutions, such as universities and professional
associations, are already developing courses and running
training for practitioners in the DSM-5.
Program policy settings will influence the rate and way that
the DSM-5 is adopted in Australia.
No formal process for ‘official’ adoption of DSM-5. However, universities
and associations change their training to support DSM-5 which will
change practice over time.
Osmotic change as institutions and practitioners gradually adopt the
new manual.
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Training on the DSM-5 is currently being developed and delivered by
some organisations (NSW ASPECT).
DSM-5 likely to be referred to in court proceedings.
Some diagnosticians and paediatricians are already using the DSM-5.
Inevitable that DSM-5 will be adopted as the standard within Australia.
View that DSM-5 will be adopted universally, but this will happen over
time as practitioners gradually are trained in and adopt the new
standard.
It is expected that it will take 18 months to 2 years to embed the DSM-5.
Policy settings by government will influence the adoption of the DSM-5
within Australia.
3) What are the significant implications of its adoption?
Summary of Key Points:
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Percentage of ASD diagnoses that would change from
DSM-IV to DSM-5 likely to be at the lower end of the
estimates (between 10-15%).
Nevertheless, unless programs change eligibility criteria
some children may not receive support.
Potential for ‘diagnosis’ shopping particularly during
transition period.
More work needs to be done on tools, clinical guidelines
and training of practitioners to support DSM-5
implementation.
Cultural adjustment and education of families will be
needed.
Impact on the diagnosis of ASD will be minimal. Very few children who
would have been previously diagnosed with ASD under DSM-IV
would now be diagnosed with SCD under DSM-5.
Researcher undertaken by NSW ASPECT indicates that only 10% of
children currently diagnosed with ASD under DSM-IV would be
diagnosed differently under DSM-5.
Those currently using the DSM-5 are finding it more reliable and an
improvement on DSM-IV (better criteria, more clarity around level of
severity, sensory sensitivity a good inclusion).
People with Asperger’s highly likely to be diagnosed with ASD, however,
the social stigma that is associated with ASD is much higher than that of
Asperger’s Syndrome.
Parents prefer the label ‘Aspie’ to Autistic. DSM-5 will require a shift in
cultural attitude to Asperger’s.
SCD a softer term and potentially more acceptable to parents however
this may disadvantage a child who has needs that are specifically
related to ASD.
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Diagnosticians do have the ability under the DSM-5 to make judgement
calls if a diagnosis is borderline. This is written into the pre-ample of the
DSM-5 manual.
Diagnosticians will have room for ‘slippage’, i.e. children with Rett’s
Disorder will also have ASD so unlikely that any of them will miss out on
current support or funding.
Need to ensure that inexperienced clinicians have sufficient training so
that they do not misdiagnose.
No guidelines to help to assess severity levels.
Clinical guidelines on the DSM-5 will be needed in Australia to ensure
consistency of approach.
Increase in need for Occupational Therapy, as the DSM-5 now picks up
on the reactivity to sensory input.
If no support for children with SCD, they will be misdiagnosed with ASD.
Severity levels will be useful in the school system, as diagnosis alone
does not provide sufficient information about support needs.
Should more universally adopt a multidisciplinary approach to
diagnosis– flip side is the pressure on waiting lists.
Multidisciplinary assessment, as opposed to multidisciplinary diagnosis,
should be best practice. In other words, there should be no need for a
team of professionals signing off on a diagnosis as this is a resource
and time intensive process and contributes to waiting lists.
4) How will the changes impact on government programs and policies?
Summary of Key Points:
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Clear impact on programs that use diagnosis as an eligibility
criteria such as HCWA.
Concern that children with a SCD and Rett’s Disorder will miss
out.
Concern that severity levels may be linked to funding and
support.
Overburdening of state-based diagnostic services.
Concern that it may give rise to more inconsistency between
government programs.
The DSM-5 will impact on programs that use diagnosis as a basis for
eligibility and funding.
Could change the numbers and types of children accessing programs.
Could lead to further inconsistencies between government programs.
Concern with the implications if DSS allows access to its programs on
the basis of DSM-IV but other Departments and levels of Government
do not.
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Concern that the severity ratings under DSM-5 may be directly linked to
access to services and funding. This is seen as particularly
inappropriate in the area of early intervention.
Queries raised about whether or not children with Rett’s Disorder will be
supported under Better Start.
Already overburdened health system which has unacceptably long wait
lists for diagnosis.
There is a significant need for sector development with particular regard
to workforce capacity.
Given the shift to the National Disability Insurance Scheme (NDIS), the
question about the DSM-5 is irrelevant. What is relevant is how
government will consider the severity levels.
Need to look at functional assessment but keep diagnostic
classifications as an entry point.
5) How should governments respond to these changes and their impact?
Summary of Key Points:
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Ideally, a consistent and co-ordinated approach.
Strong support for shift to functional basis for access to
funding.
Strong message that children who need support should not
miss out.
Various suggestions for a policy response.
Communication with Autism Advisors, families and
professionals about any policy response is paramount.
For the sake of families, a consistent approach is critical.
View that where the DSM-5 impacts on eligibility for support or funding,
then there needs to be uniformity across government on which version
is used.
The interface between Government departments at the federal and state
levels is not operating as it should be. Clinicians are not sure how one
system interfaces with another.
Commonwealth bodies need to take the lead and set a timeframe for
shift to diagnosis based on DSM-5. In this way the industry will be more
likely to make a move and ensure some level of consistency.
DSS needs to lead the way and open up discussion with State
Government on the DSM-5.
Need to ensure decisions at the Commonwealth level do not negatively
impact of child’s access to state government services.
Some support for the interim policy position on HCWA becoming the
long term position.
Some support for referencing both the DSM-5 and ICD-10 if a diagnostic
manual reference was required.
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Some not supportive of a combined DSM-5 and ICD-10 solution. ICD-10
is more of a classification system than diagnostic criteria. DSM-5 is
more helpful in diagnosis and is the preferred manual.
Some support for explicitly shifting to DSM-5 to promote a common
language, consistency and to avoid confusion.
Developmental needs and functional assessments are a much better
basis for determining eligibility to programs and funding.
Functional assessments must override categorical diagnosis. This is a
more sensitive and equitable way to determine distribution of funding.
The shift to functional assessment will greatly assist teachers in school
as a label is not useful in supporting the child.
Two children with exactly the same diagnosis will be impacted by their
disability in very different ways. They will consequently have very
different needs and these needs will vary depending on their
environment i.e. their experiences, level of family support, school setting
versus home setting. In other words the diagnosis alone is not the basis
for determining level of support or distribution of funds.
If funding is based on severity level and children’s severity levels
change, what is the process for review?
Severity levels operate under a deficit model. Should not be the basis
for funding.
In some cases, children with lower severity ratings may have more
potential for a good outcome from early intervention and therefore
require funding. The economic case may be greater for more funding for
these children.
Noted that the DSM-5 clearly states that level of funding and support
should not be linked to severity level (these are different domains).
Transition to the NDIS and a functional assessment will address the
issue in the longer term.
Need to use standard tools, not just standard diagnostic criteria. If
anything this is a more urgent concern.
HCWA can make an important contribution to the child’s trajectory,
however if support is not continued in the school system, early
intervention is wasted.
The interface between early intervention and education is critical.
Children who have had good outcomes as a result of early intervention
can slide backwards if support in schools is not at adequate levels.
Critically important to ensure that the benefits of early intervention and
programs such as HCWA are not undermined by a lack of support and
funding as the child transitions to school.
There is a social and economic argument for supporting children with
PDD-NOS or SCD with funding.
Social and Communication Disorder should be included as a diagnosis
under HCWA.
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HCWA should accept a provisional assessment, particularly where
diagnosis is borderline or child is too young to make a conclusive
diagnosis.
Governments should ensure there is a safety net for children who don’t
meet the criteria.
Autism Advisors need to be well informed and can assist communication
with health professionals.
Education needed for parents on the changes.
Effort needs to go into supporting parents and services in regional and
remote localities.
Need to support families of culturally and linguistically diverse
background.
Children with Rett's Disorder need physiotherapy so they are best
placed with Better Start.
Other Issues:
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General concern about the interface between mental health and ASD.
Systemically, we do not do well with this interface and individuals do not
get the co-ordinated services they need.
Many questions were asked about the NDIS and the transition of the
HCWA package into the National Disability Insurance Scheme.
Both HCWA and Better Start miss a range of conditions that would
benefit from early intervention, such as those with learning and
communication difficulties.
Need for more rigour and evidence base for functional assessments.
General lack of good functional assessment tools especially for those
with high functioning ASD.
Raising Children Network will need to have a section on SCD.
Diagnosis and functional assessments are two distinct processes.
Children with Asperger’s Syndrome don’t get the level of support they
need in schools as school funding is focussed on intellectual disability.
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State-specific issues:
NSW
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Training on the DSM-5 is currently being developed and delivered by
some organisations (NSW ASPECT).
ACT
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ACT Department of Education reviewing and still to determine their
position in relation to the DSM-5.
Interest in the transition of HCWA to the NDIS and how this will
happen in the ACT in July 2014.
South Australia
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Frustration from health professionals about the lack of information
on eligibility to the NDIS.
Autism SA volunteered to send package of information to service
providers.
Paper looking at the impact of the DSM-5 about to be published in
SA – Robin Young.
Victoria
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Need for undergraduate training is being picked up by La Trobe
University which is developing a series of training packages that will
be rolled out to universities in WA, NSW, VIC and QLD. Autism
CRC also has undergraduate training on its agenda.
Tasmania
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View that PDD-NOS is over-diagnosed in the State.
Systemic issues in the schooling system for children with disability.
DSM-5 has not been universally adopted in the state. Professionals
are making separate decisions.
Some are reluctant to shift to the DSM-5, concerned that children
may miss out on needed support. Others are using both the DSM-IV
and DSM-5, other again have shifted to the DSM-5 as the current
accepted standard.
ICD-10 not used in Tasmania.
State government still using the DSM-5 until more information about
the impact on eligibility to government programs is known.
State Health bases support on functional assessment, not diagnosis.
State as a whole is set up more along functional lines.
Northern Territory
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Charles Sturt University is providing training on both the DSM-5 and
the ICD-10.
Issue with diagnosing Indigenous children due to stigma associated
with disability. In addition, often other health issues, such a Foetal
Alcohol Syndrome, get confused with a diagnosis for a disability or
takes precedence in terms of care, so ASD gets put to the back and
a child may never receive a diagnosis.
Issues in the NT with internet access and ability for parents to find
and use web-based information.
Queensland
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Significant areas of QLD are in crisis in terms of availability of
services to do functional assessments.
Regional and Remote issues, however, similar issues also exist in
the city.
Department of Education in the process of considering impact on
Education programs. For 2013, Department will accept diagnosis
under both the DSM-IV and DSM-5. Will not be requiring parents to
go back for reassessment.
Bond University doing some work on the severity levels and subtypes and individualised profiles. The university is also developing
information packages for parents, teachers and other professionals.
Outcomes of the National Expert Workshop:
Summary of Key Points:
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DSM-5 does not pose significant changes, as changes in
diagnostic criteria for ASD from the draft have resulted in a
broadening rather than the expected narrowing of diagnoses.
Severity rating should not be used as a basis for determining
levels of funding.
Children diagnosed with SCD should continue to receive
funding and support.
Guidelines for clinicians are required to support the proper and
consistent implementation of the DSM-5, particularly in relation
to elements such as severity levels.
Sector capacity is a significant issue, particularly in relation to
the importance of better training of clinicians.
Good interface between HCWA and education systems is
important to ensure gains in early intervention are not lost.
Severity levels are concerning if used to determine level of funding. In
addition, severity levels are not static throughout an individual’s life; they
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change, particularly during transition points e.g school, home, birth of
siblings.
Need for a process through which severity levels can be monitored and
reviewed.
Clinicians need guidelines in order that severity levels are diagnosed in
a consistent way. This has implications for training and practice.
Increased emphasis on severity and its link to funding may compound
differences already evident in different states.
Children diagnosed with SCD must continue to receive funding.
Will exclusion of Rett’s Disorder from the DSM-5 be the thin edge of the
wedge? Will other genetic disorders follow? Concern this could lead to
less support for these children who still need it regardless of etiology.
Ongoing issues regarding the community’s understanding of the
changes in the DSM-5 and implications for diagnosis.
Revision of the ICD-10 to the ICD-11 may have further implications.
For children with ASD it is important not to forget issues associated with
co-morbidity.
Policy Options:
A number of policy options, drawn from the outcomes of the capital city forums,
were put to the group. These were:
A. Continue with the interim policy for HCWA until full transition to the
NDIS.
B. Explicitly shift eligibility to diagnosis under DSM-5 (and ICD-10).
C. Consider Rett’s Disorder for inclusion under Better Start.
D. Review SCD for inclusion at a later date.
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Participants were asked to discuss their strengths and weaknesses. The
following tables summarises the discussion:
Policy Option A: Continue with the interim Policy for HCWA
Strengths
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Weaknesses
Allows more time to gather research on
the implications of moving explicitly to the
DSM-5.
Allows preparation for transition to the
NDIS.
No wasting of time and resources to
develop a new position or implement
additional changes.
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Potential for inconsistency across
States/Territories and service systems as
covers both the DSM-IV and DSM-5
conditions.
Excludes SCD.
Position does not explicitly support and
reinforce the shift from DSM-IV to DSM-5.
Policy Option B: Explicitly shift eligibility to diagnosis under DSM-5 (and ICD-10)
Strengths
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Weaknesses
The sector is already moving to the DSM5 which is the new accepted standard and
supersedes the DSM-IV.
This would explicitly support this shift.
May assist in consistency across
programs by adopting a single standard.
Will also minimise confusion for families
and clinicians.
Timing would be critical in phasing out the
DSM-IV.
If the ICD-10 is included this will pick up
the conditions covered by the DSM-IV
anyway.
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Would need to be a phasing period as
clinicians are trained in and adopt the
DSM-5.
May still be inconsistencies with other
programs/levels of government.
SCD would still need to be considered for
inclusion.
Would need to be supported by a strong
communication strategy.
Currently lack of a body to monitor
adoption of the DSM-5.
Would not provide a single standard if the
ICD-10 is included.
Policy Option C: Consider Rett’s Disorder for inclusion under Better Start
Strengths
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Weaknesses
Physiotherapy not available for funding
under HCWA, so inclusion of Rett’s
Disorder under Better Start a sensible
move.
More consistent with changes to DSM-5.
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Rett’s community has not yet been
consulted as a specific stakeholder.
Why would Rett’s be included under
Better Start as a priority over other
conditions?
Policy Option D: Review Social Communication Disorder for inclusion at a later date
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Strengths
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Weaknesses
Allows for time for better investigation into
impact of the DSM-5 and the types of
disorders that make up SCD.
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The review will take time. Important that
SCD be retained for funding under HCWA
now.
Other Issues:
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Need to retain and develop the Autism Advisor Program on an ongoing
basis, as this program has been very valuable in assisting parents to
navigate the service system.
Policy decisions are needed as soon as possible in South Australia due
to the launch of the NDIS in this state. Access to HCWA package for to
0-3 year olds is already closed.
The NDIS is seen to potentially exacerbate existing issues with sector
capacity.
During the period 2013 – 2019, functional assessment tools that are
ASD sensitive need to be developed and trialled. Karolinska Institute in
Sweden currently undertaking work in this area.
Would like to see ongoing consultation on the implications of the DSM-5
to 2019.
Planning around provision of support for children with disability must
take into account the importance of the interface with education and
adopt a life-long approach to providing support.
Parents and families require significant support as many find it very
difficult to navigate the service system.
Inconsistencies of access to the mental health system and other comorbidity issues.
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Attachment A
HCWA Interim Policy Response:
DSS has undertaken a consultation process to inform the development of a
policy position on a potential shift to DSM-5 and eligibility for HCWA. However,
an interim policy position was required given the DSM-5 has been published
and some practitioners in Australia have already begun to use it.
This interim policy position involves replacing the current explicit reference to
the DSM-IV in the HCWA eligibility requirements with a list of accepted
diagnoses by a suitably qualified practitioner. This list would include diagnoses
under both DSM-IV and DSM-5 as well as the more general diagnosis of autism
used by some diagnosticians. This approach will maintain, in principle, the
current scope of the program.
The wording of the interim policy position is as follows:
“Diagnosis - The Autism Advisor must sight a written conclusive diagnosis
made in Australia by or through any one of the following:
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a State/Territory Government or equivalent multidisciplinary assessment
service; or
a private multidisciplinary team; or
Paediatrician; or
Psychiatrist.
A multidisciplinary assessment team must consist of a psychologist and speech
pathologist but may also include an occupational therapist.
An acceptable diagnosis is one of the following conditions, as diagnosed by one
of the professionals listed above:
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Autism;
Autism Spectrum Disorder;
Autistic Disorder;
Asperger’s Disorder/Syndrome;
Rett’s Disorder;
Childhood Disintegrative Disorder; or
Pervasive Developmental Disorder – Not Otherwise Specified (PDDNOS).”
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Attachment B
DSM-5 Consultation Schedule
State/Territory
Key Stakeholder
Forums
National Expert
Workshop in
Melbourne
State
Location
Date
Time
NSW
280 Elizabeth Street,
Sydney
Friday 28 June
9.30am – 12.30pm
ACT
TOP, Athlon Drive,
Canberra
Friday 5 July
9.30am – 12.30pm
SA
11 Waymouth Street
Adelaide
Monday 8 July
9.30am – 12.30pm
TAS
199 Collins Street Hobart
Wednesday 10
July
9.30am – 12.30pm
VIC
2 Lonsdale Street
Melbourne
Thursday 11
July
9.30am – 12.30pm
WA
152-158 St George’s
Terrace, Perth
Friday 12 July
9.30am – 12.30pm
NT
39-41 Woods Street,
Darwin
Tuesday 23 July
9.30am – 12.30pm
QLD
100 Creek Street,
Brisbane
Wednesday 24
July
9.30am – 12.30pm
VIC
ParkRoyal, Melbourne
Airport
Tuesday 30 July
9.30am – 1.30pm
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Attachment C
Capital City Forum Participants
Sydney:
Name
Organisation
Elspeth Froude
Senior Lecturer, School of Allied and Public Health, Australian Catholic
University
CEO, Autism Advisory and Support Service
Manager Building Blocks , ASPECT
Consultant Paediatrician and Head of Child Development Unit, University
of Sydney
Catholic Education Commission of NSW
ASPECT
Royal Australian and New Zealand College of Psychiatrists
Manager Education Support and Family Services, KU Children’s Services
Brain & Mind Research Institute – University of Sydney
Psychological Services Compliance Support Advisor, NSW Department of
Education and Communities
NSW Department of Education and Communities
Project Officer, Carers NSW
Senior Policy Officer, The Royal Australasian College of Physicians
Researcher, Macquarie University
Chair, Paediatric Policy and Advocacy Committee, Royal Australasian
College of Physicians
Section Manager, Disability Carers and Mental Health, NSW State Office,
DSS
Disability Carers and Mental Health, NSW State Office, DSS
A/g Branch Manager, Autism and Early Intervention Branch, National
Office, DSS
Section Manager, Autism and Early Intervention Branch, National Office,
DSS
Autism and Early Intervention Branch, National Office, DSS
Grace Fava
Rachel Kerslake
Natalie Silove
David Hawkins
John Kelly
Stewart Einfeld
Susan Montrose
Lisa Whittle
Kristine Bajuk
Kerry Moran
Louise Bradley
Alex Lynch
Jon Brock
Jacqueline Small
Ed Hughes
Rosemary Bailey
Leonie Corver
Paul Miller
Sandra Vecchi
ACT:
Name
Organisation
Peter Brady
Rosemary Agnew
Tej Kaur
Bob Buckley
Travis Gilbert
Trish O’Neil
Narelle Smart
Rexton DCruz
Elise Jordaan
Jacinta Evans
CEO, Autism Asperger ACT
Mental Health Team Leader| ACT Medicare Local
Senior Psychologist, Therapy ACT
Advocate, Autism Aspergers Advocacy Australia
Policy Officer, Mental Health Council of Australia
Committee Member, Autism Asperger ACT
Senior Psychologist ACT Education and Training Directorate
Psychologist
Therapy ACT Community Services Directorate
Senior Manager, Therapy ACT, Disability ACT
19
Pam Connor
Leonie Corver
Paul Miller
Sandra Vecchi
Chris Eizele
Kerrie Delves
Carolyn Wilkes
Psychologist
A/g Branch Manager, Autism and Early Intervention Branch, National
Office, DSS
Section Manager, Autism and Early Intervention Branch, National Office,
DSS
Autism and Early Intervention Branch, National Office, DSS
Autism and Early Intervention Branch, National Office, DSS
Autism and Early Intervention Branch, National Office, DSS
Autism and Early Intervention Branch, National Office, DSS
Adelaide:
Name
Organisation
Amanda Harris
Hugh Stewart
Jon Martin
Sodeman, Sue
Louise Davies
Tim Kittel
Psychologist, Autism SA
Occupational Therapy Program, University of South Australia
Autism SA
Department for Education and Child Development
Autism SA
Principal Speech Pathologist, Department for Education and
Child Development
Disability Services, Department for Communities and Social Inclusion
Disability Services, Department for Communities and Social Inclusion
Paediatrician, Women's and Children's Hospital
School of Health Sciences (Occupational Therapy) University of SA
Women’s and Children’s Hospital, SA Health
David Smith
Janice Clarke
Chris Pearson
Shelly Wright
Mohammed
Usman
Kathryn Moar
Gallus, Liberty
Sandy Policansky
Jo Shearer
Leonie Corver
Paul Miller
Sandra Vecchi
Brett Coughan
Maree McColm
Fiona Macgregor
Sue McKay
Coordinator, Psychologist, Flinders Medical Centre
Paediatrician, Flinders Medical Centre
NDIA
Executive Officer, Ministerial Advisory Committee, Students with
disabilities
A/g Branch Manager, Autism and Early Intervention Branch, National
Office, DSS
Section Manager, Autism and Early Intervention Branch, National Office,
DSS
Autism and Early Intervention Branch, National Office, DSS
SA State Office, DSS
Section Manager, SA State Office, DSS
SA State Office, DSS
SA State Office, DSS
Hobart:
Name
Organisation
Larry Cashion
Rosalie Martin
Ruth McBrien
Mary Jackson
Kirsty Bartlett
Clark
Roz Loveless
Specialist Consultant Psychologist
Speech Pathologist, Speech Pathology Tasmania
Senior Psychologist, Tasmanian Autism Diagnostic Service
Executive Officer, Tasmanian Autism Diagnostic Service
Allied Health Manager, St Giles Society
Planner, NDIA
20
Jill Curtis
Kereth West
Meroe Robertson
Alison Hopwood
Karen Mason
Jodi Hill
Terry Burke
Leonie Corver
Paul Miller
Sandra Vecchi
Speech Pathologist, St Giles Society
Psychologist, Department of Health and Human Services
Psychologist, Disability & Community Services South West
Independentkids Occupational Therapy
Speech Pathologist, St Giles Society
Occupational Therapist, Development Assessment Team, St Giles Society
Autism TAS
A/g Branch Manager, Autism and Early Intervention Branch, National
Office, DSS
Section Manager, Autism and Early Intervention Branch, National Office,
DSS
Autism and Early Intervention Branch, National Office, DSS
Melbourne:
Name
Organisation
Gloria Staios
Tristan Nickless
Wendy Sturgess
Gail Preston
Stephanie Gotlib
Sarah Dymond
Mary Thomson
Dr Avril Brereton
Speech Pathology Australia
Speech Pathology Australia
Chief Executive Officer, Alpha Autism
Principal, Eastern Ranges School
Executive Officer, Children with Disability Australia
Practical Autism Research Centre
Western Autistic School
Senior Research Fellow, School of Psychology and Psychiatry, Monash
University
Royal Australian and New Zealand College of Psychiatrists
Royal Australian and New Zealand College of Psychiatrists
Manager, Occupational Therapy, Royal Children's Hospital, Melbourne
Interim Statewide ASD Coordinator, Department of Psychiatry, University
of Melbourne
The Royal Australasian College of Physicians
Director, Olga Tennison Autism Research Centre, La Trobe University
Bruce Tonge
Sandra Radovini
Lisa Vale
Frances Saunders
Catherine Marraffa
Cheryl
Dissanayake
Alexandra
Gunning
Murray DawsonSmith
Kate Rogers
Leonie Corver
Paul Miller
Sandra Vecchi
Sonia Pase
Director, Engagement, Barwon Launch Transition Agency, Disability Care
Australia
Chief Executive Officer, Amaze (Autism Victoria)
Regional Policy office, The Royal Australasian College of Physicians
A/g Branch Manager, Autism and Early Intervention Branch, National
Office, DSS
Section Manager, Autism and Early Intervention Branch, National Office,
DSS
Autism and Early Intervention Branch, National Office, DSS
Victorian State Office, DSS
Perth:
Name
Organisation
Michele Thomas
Joan McKenna
Kerr
Rebekah Renwick
Senior Clinical Advisor, Autism Association of WA
CEO, Autism Association of WA
Autism Advisor Program, Autism Association of WA
21
Candy Payne
Sharleen Chilvers
Carmela Pestell
Suzanne Midford
Carole Caccetta
Val McKelvey
Kate Smith
Susan Rosendorff
Robyn Weinstein
Sharyn Mascall
Tracy Foulds
Timothy Smith
Asher Verheggen
Sue Coltrona
Katrina Kelso
Naomi Ward
Sabrina de Beer
Leonie Corver
Paul Miller
Sandra Vecchi
Team Leader, Autism Association of WA
Manager Statewide Resource and Consultancy, Disability Services
Commission
School of Psychology , The University of Western Australia
Specialist Clinical Psychologist, Perth Psychological Services
Paediatrician for Child Health, WA Autism Diagnosticians Forum
Catholic Education Office
Chairperson, WA Autism Diagnosticians Forum
Autism Education Service, Department of Education
Speech Pathologist, Step Ahead Speech Language & Literacy
senior speech pathologists TLC-WA
Statewide Specialist Services, Disability Services Commission
Statewide Specialist Services, Disability Services Commission
WA Branch President, Speech Pathology Australia
Policy Team Leader, Statewide Specialist Services, Disability Services
Commission
Speech-Language Pathologist/ Practice Manager Language, Speech &
Learning Services
Psychologist and Director, Child Wellbeing Centre
speech pathologist
A/g Branch Manager, Autism and Early Intervention Branch, National
Office, DSS
Section Manager, Autism and Early Intervention Branch, National Office,
DSS
Autism and Early Intervention Branch, National Office, DSS
Darwin:
Name
Organisation
Annie Farmer
Senior Education Advisor: ASD Schools Support Services, Department of
Education
Speech Therapist, MD Consulting Speech Pathology
Private Psychologist
Mental Health Advisor, Carers NT
Senior Occupational Therapist and Practice Manager, OT for Kids NT
OT for Kids NT
Occupational Therapist, OT for Kids NT
Occupational Therapist, Children’s Development Team, Department of
Health
Executive Officer, Autism NT
Team Manager, Child and Adolescent Mental Health, Department of
Health and Families
Manager Disability Services, Department of Education and Children's
Services
Directorate Manager, Department of Education and Children's Services
ASD Team Coordinator, Department of Education and Children's
Services
School Psychologist, Department of Education and Children's Services
Child and Adolescent Mental Health, Department of Health and Families
Merryn Dearsden
Peter Laming
Robynann Dixon
Shannon Hallatt
Lucy Muller
Brie Espirito Santo
Karen Dong
Merryn Affleck
Gail Bowker
Kath Midgley
Karen Wilson
Annie Farmer
Anna Wilson
Emma Reid
22
Mark Davis
Averil Ivey
Mitchell Cole
Paul Miller
Sandra Vecchi
Charles Darwin University, Assessment Services, Psychology Clinic,
CDU
Speech Pathologist, Top End Remote Disability Services, Department of
Health, Northern Territory
Branch Manager, Autism and Early Intervention Branch, National Office,
DSS
Section Manager, Autism and Early Intervention Branch, National Office,
DSS
Autism and Early Intervention Branch, National Office, DSS
Brisbane:
Name
Organisation
Winnie Yu Pow Lau
Beth Saggers
Fiona Jones
Alan Smith
Fiona Anderson
Jessica Paynter
Vicki Bitsika
Simone Caynes
Cathy McBryde
Frances Scodellaro
Gaenor Dixon
Jacqueline Boon
Kerri Webb
Diane Heaney
Mitchell Cole
Minds and Hearts Clinic
Faculty of Education, Queensland University of Technology
On Call Children's Therapy Network
AEIOU Foundation
Australian Advisory Board on Autism Spectrum Disorders
AEIOU Foundation
Director, Centre for Autism Spectrum Disorders, Bond University
Queensland Mental Health Commission
Occupational Therapy Australia
Autism Queensland
Speech Pathology Australia
Paediatric Neuropsychologist, Private Practice
Child and Youth Community Health Service, Queensland Health
Director of Education, AEIOU Foundation
Branch Manager, Autism and Early Intervention Branch, National Office,
DSS
Section Manager, Autism and Early Intervention Branch, National Office,
DSS
Autism and Early Intervention Branch, National Office, DSS
Paul Miller
Sandra Vecchi
23
Attachment D
National Expert Workshop – participants:
Name
Organisation
Stephen Gianni
Katrina Williams
Gail Mulcair
Penny Beeston
Murray Dawson-Smith
Joan McKenna Kerr
Jon Martin
Terry Burke
Merryn Affleck
Bob Buckley
Valsamma Eapen
Stefanie Evans
Camilla Andrews
Cheryl Dissanayake
Prof Tim Hannan
Bruce Tonge
A/g CEO, Australian Federation of Disability Organisations
Director, Australian Advisory Board on ASD
Chief Executive Officer, Speech Pathology Australia
Chief Executive Officer, Autism Queensland Inc.
Chief Executive Officer, AMAZE (Autism Victoria)
Chief Executive Officer, Autism WA
Chief Executive Officer, Autism SA
Chief Executive Officer, Autism Tasmania
Chief Executive Officer, Autism NT
Convenor, Autism Aspergers Advocacy Australia
Chair, Infant Child and Adolescent Psychiatry, University of NSW
Director, Asperger Services Australia
Director, Asperger Services Australia
Director, Olga Tennison Autism Research Centre, La Trobe University
Board Director, The Australian Psychological Society
Research Fellow, The Royal Australian and New Zealand College of
Psychiatrists
Research Fellow, Olga Tennison Autism Research Centre, La Trobe
University
NSW ASPECT
Associate Dean Research, Faculty of Education
Australian Catholic University
Director, General Practice, Nursing, Optometry and Allied Health
Department of Health and Ageing
Assistant Director, General Practice, Midwifery, Allied Health and
Nursing, Department of Health and Ageing
Speech Pathologist, Speech Pathology Australia
Director of Engagement, NDIA, South Australia
Policy Officer, Royal Australasian College of Physicians
Manager, Occupational Therapy, Royal Children’s Hospital
Department of Developmental Medicine, The University of Melbourne
Group Manager, Disability and Carers Group, National Office, DSS
Branch Manager, Autism and Early Intervention Branch, National
Office, DSS
Section Manager, Autism and Early Intervention Branch, National
Office, DSS
Autism and Early Intervention Branch, National Office, DSS
Giacomo Vivanti
Dianne Holbery
Deb Keen
Kate Medwin
Evelyn Sharman
Gloria Staios
Alex Gunning
Kate Rogers
Lisa Vale
Catherine Marraffa
Evan Lewis
Mitchell Cole
Paul Miller
Sandra Vecchi
Note: Apologies were received from the Department of Education Employment
and Workplace Relations (DEEWR) and Carers Australia.
24