World first Autism Spectrum guideline launched
Hon Chris Carter
Minister of Education
Hon David
Cunliffe
Minister of Health
2 April 2008 Media Statement
World first Autism Spectrum guideline launched
Minister of Education Chris Carter and Minister of Health David Cunliffe today launched a comprehensive Autism Spectrum Disorder Guideline making New Zealand world leaders in this area.
Mr Cunliffe said World Autism Awareness Day was the perfect occasion for New Zealand to release its groundbreaking guidelines that aim to improve available support and services for those living with these disorders.
Minister of Education Chris Carter was unable to attend today’s launch but said the guideline provided an opportunity to build relationships across sectors to make a difference in the lives of people with by ASD.
“This Guideline is a key tool that will provide support to families and schools.
“It is a resource for schools to make sure they have access to information so that students with ASD receive the help they need,” Mr Carter said.
“The Guideline puts New Zealand at the forefront of information on ASD and will help helping people with ASD, their families, whanau, and service/support providers make sense of the wealth of research that’s out there,” Mr Cunliffe said.
The NZ Autism Spectrum Disorder Guideline is a joint project of the Ministries of Health and Education and is based on overseas and New Zealand evidence, experience and practice.
“It’s about getting better at recognising, treating and managing ASD and identifying gaps in services”
“We have allocated $18.16 million over four years to implement the recommendations of the new guideline.”
Mr Cunliffe encouraged parents and individuals with ASD to use the information in the guideline to get the best advice, support and care available.''
"I expect that health professionals, educators and support agencies will use the guideline to help them provide the best evidence informed care and support for people with ASD and their families.”
The guidelines are one of the first of its kind that cover the whole of life as well as health, education, disability, Maori and Pacific perspectives
”It takes us forward into the future where I hope people with ASD will be better supported as they make significant contributions to their own families, communities, and New Zealand.”
Autism Spectrum Disorder is a life-long developmental impairment that can affect the way a person communicates, their social interaction and behaviour.
It covers a range of conditions, including Aspergers Syndrome, and the difficulties experienced vary from person to person.
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Attachment: New Zealand Autism Spectrum Disorder Guideline Summary (PDF)
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FAQs for launch of NZ ASD Guideline
Developing the guideline
1. How did the
guideline come about?
The Ministries of Health and
Education initiated the guideline in September 2002 in
response to recommendations in the Curry Report which
reviewed autism services.
2. Why has it taken so long to
get the guideline to publication?
The main reason is
that the guideline is very comprehensive – it covers
health, education and community settings, and takes a
‘whole of life’ approach. We needed substantial time to
analyse and check the wide range of evidence, expertise and
practice. This was essential to ensure that we are
absolutely confident in the credibility of the information
we included in the guideline.
The guideline also represents a groundbreaking collaborative initiative that involved a wide range of people, including those with ASD and their families and whānau, both within New Zealand and from overseas.
We allowed time for detailed consultation and to make the changes that resulted, including changing the guideline’s structure after feedback.
3. How was
the guideline put together?
We set up three workstreams
to develop the guideline: Assessment and Diagnosis;
Education; Support and Transition. We also set up
stakeholder reference groups to provide input into each
workstream. We held hui and fono to seek Māori and Pacific
peoples’ input, and we sought input from Pacific
researchers.
4. Who had input into the guideline?
In
December 2002, we established an ASD Guideline Steering
Group to ensure a range of user perspectives were included
in the development of the guideline. The group included
adults with ASD, parents/families, the Royal Australia and
New Zealand College of Psychiatrists, the Paediatric
Society, disability provider organisations, Needs Assessment
Service Coordination services, Child, Youth and Family,
Pacific advisors, school principals, early intervention
services.
Officials from the Ministries of Health (Disability Services, Māori Health Clinical Services and Mental Health directorates), Education (Special Education) and Child, Youth and Family were involved in the development of the guideline.
Once a draft guideline was developed, we sent it out for public consultation and received 108 submissions.
5. What overseas input was there?
The
Diagnosis and initial assessment section of the guideline is
based on the UK National Autism Plan for Children. In
addition, we asked seven internationally acknowledged ASD
experts to peer review the draft guideline.
6. What in
the guideline was changed as a result of consultation?
We made a lot of changes as a result of the consultation
and expert peer review feedback. These changes included the
actual structure of the guideline, adding more research
evidence, and rewording of some sections to make them
clearer.
7. What happens now?
The New Zealand
Guidelines Group has been awarded a contract to develop an
implementation plan, The plan will be developed by the end
of June 2008 and an implementation advisory group will be
established.
Guideline content
8. Who is the guideline
for?
The guideline includes information for people with
ASD, health professionals, anyone involved in education,
from early childhood to tertiary, community supporters,
parents and grandparents, employers, policy advisers.
9.
What points of interest does the guideline raise for health
professionals?
The guideline reinforces:
the need
to identify children with autism spectrum disorders early in
life. This is essential to enabling early interventions and
to people functioning better in later life.
that
there is no cure for ASD.
the need for parent’s
enquiries regarding developmental concerns about their child
to be taken seriously. The need to clearly identify pathways
for them to access assessment (the guideline describes some
of these pathways).
multidisciplinary assessments
through specialist ASD services as the best approach to
improving diagnosis.
the need for robust information
on effective assessment and diagnosis processes for
different age groups.
the need for advice on
effective assessment tools and the role of cognitive
assessment when health professionals are assessing people
suspected of having ASD.
10. What points of interest does
the guideline raise for anyone involved in education, from
early childhood to tertiary?
The statement that it is
unlikely that there will ever be a single approach or
solution that will meet the needs of all learners with ASD.
Teachers and special education providers need to choose
approaches that fit the individual and their settings, and
need to be skilled in providing a range of
interventions.
Teachers and specialist service
providers should be aware that strategies need to be
implemented across home, early childhood education, school
and community settings if we are to achieve successful
outcomes for children and young people with ASD.
The
guideline outlines three broad approaches upon which most
overseas educational intervention programmes are based:
discrete trial training (DTT); contemporary behavioural and
developmental research findings; and developmental (social
pragmatic) approaches. Some programmes include elements of
all three. No one approach has been shown to be more
effective than another.
Anyone involved in education
needs to be aware that current special education practice in
NZ emphasises participation and development, rather than
‘fixing’ the child.
That teaching children with
ASD in isolated settings away from other children is not
best practice. It is crucial that we support children and
young people to use what they learn in more than one setting
and we can best achieve this by working collaboratively with
parents, teachers and peers.
People providing
services and support to children and young people with ASD
must have a positive attitude, expertise in ASD, and the
willingness to work in a team with the family.
We
should make services available so that a young child is
appropriately engaged across a variety of home, educational
and community settings in goal-directed activities for 15-25
hours per week (Note this does not mean that service
providers have to be with the child for all of these hours,
but others need to be supported to assist).
We
should be monitoring and evaluating interventions on an
ongoing basis. We should make changes to an intervention if
there is no evidence of progress within a few months.
We should incorporate the principles of positive behaviour
support into educational interventions, particularly with a
focus on understanding the function of the child/young
person’s behaviour.
We should carefully plan all
transitions, and carefully prepare the new
environment.
11. What’s new about this guideline for
people with ASD?
People with ASD will find the
information for health professionals and those involved in
education useful in working with these service providers.
Not only that, but for the first time in the world, we have
collated the best available information about effective ways
to support people with ASD into one volume. You do not have
to seek out information from multiple sources, nor try to
make sense of sometimes conflicting claims.
The NZ ASD Guideline recognises that people with ASD make significant contributions to society, rather than describing ASD in ways that medicalise the disorder, or view it as a disorder that has negative impacts.
12. What’s new about the
guideline for parents?
We have bought together a single
collection of evidence about effective support and services
for people with ASD, from birth through to older age.
Parents can use the evidence in the guideline to clarify
your expectations and work with service professionals
through all the stages of your children’s
development.
13. How will the guideline be kept up-to-date
with new research and evidence?
We are taking a
‘Living Guideline’ approach, using a process of
continuously appraising new information and research. We
will publish amendments and updates to the guideline on the
Ministry of Health website. We will review the full
guideline in 2013.
14. How long will it take to update
the guideline when new research becomes available?
The
‘Living Guideline’ process is leading edge and so far
has not been applied to ASD. We will develop details of the
‘Living Guideline’ process during 2008.
15. How will
we know when the guideline has been updated?
You can
register through the Ministry of Health website and we will
notify you of changes to the guideline and other related
information updates.
The impact of the guideline
16.
What is the guideline intended to achieve?
Our intention
is that the information in the guideline will help improve
the advice, support, services and care for people with ASD,
and their families. We expect to see health professionals,
educators, policy advisers and employers using the guideline
to inform your decisions about care and interventions. We
hope parents and individuals with ASD will also use the
information in the guideline to seek the best advice,
support and care available.
17. Is there any intention to
make the guideline compulsory? Why/why not?
Not at this
stage.
18. What will be done to help health professionals
and educators observe the information in guideline?
The
Ministries of Health and Education will ask for evidence
from service providers that the guideline has been used to
design and deliver services for people with ASD, and their
families/whānau. We will also make the guideline the base
for all relevant service specifications and contracts.
19.
What do you expect will change for people with ASD as a
result of having this guideline?
People with ASD,
families/whānau, health professionals, education providers
and other interested parties will have improved access to
consistent information. Recommendations will be priortised
for ongoing service development a single source of credible
and reliable information rather than competing, conflicting,
and fragmented information, advice and approaches.
20.
How will policy makers use the guideline?
Policy makers
will use the guideline as the basis for reviewing existing
policies and when developing new policies.
21. How do you
expect educators and health professionals will use the
guideline?
We are expecting them to know what’s in the
guideline, use it, promote it, quote it, and expect to be
asked by their clients how their advice matches with
what’s in the guideline.
22. How do you expect parents
and people with ASD will use the guideline?
We are
encouraging parents and people with ASD to know what’s in
the guideline, use it, promote it, quote it, and expect
their professional service providers to provide them with
advice and services that are consistent with what’s in the
guideline.
23. What are the ministries doing to implement
the recommendations in the guideline?
The New Zealand
Guidelines Group has been awarded a contract to develop an
implementation plan, The plan will be developed by the end
of June 2008 and an implementation advisory group will be
established.
24. What were the results of the Impact
Analysis?
The impact analysis team identified some areas
that need to be strengthened and these will be considered in
our implementation planning.
Technical questions about the content of the guideline
25. What about those
medications or therapies that are not in the guideline? Are
you saying they won’t work?
We have only included
medications, therapies and strategies in the guideline that
have strong evidence to back up their effectiveness, or that
are strongly supported by experts. We have also made
comments about some interventions and treatments which have
been proven not to work, or even cause harm.
If a medication, therapy, or approach is not in the guideline, it doesn’t mean that it will not work, but it is an indication that its effectiveness hasn’t been thoroughly researched or proven.
26. How did you decide what was
sound evidence?
The workstreams appraised individual
studies against a checklist used by the NZ Guidelines Group
(a network of health and disability professionals and
consumer representatives who have a common interest in the
process of guidelines development and implementation). They
also weighed up evidence according to the quality,
consistency, applicability and clinical impact of all the
studies that formed that body of evidence.
27. How did
you decide what expert opinions to include, and what not to
include, and how did you determine what was best practice?
All the workstreams used the processes recommended by
the NZ Guidelines Group. Workstream one adapted the UK
National Autism Plan for Children as the basis for their
appraisal, while the other workstreams used broad
evidence-based principles to guide the development of their
sections.
The lists of practice questions and the resulting evidence tables are available at www.moh.govt.nz/autismspectrumdisorder
28. Why have
applied behaviour analytic interventions (ABA) not been
included in the guideline?
Through the consultation
process, we received feedback that some research into ABA
had not been included. We have started an independent review
of the available research. We will update the guideline, if
appropriate, once this review has been completed towards the
end of 2008.
29. What other treatments were not included
in the guideline?
The guideline does not claim to cover
every intervention related to ASD. There is very little
information on the long-term consequences (including safety)
of using a range of medication for people with ASD. The
guideline includes some information on some of the
alternative treatments for ASD, it has not covered them
all.
30. What does the guideline say about
immunisation?
All children should be fully immunised,
including the MMR vaccine (Measles, Mumps and Rubella)
according to the NZ immunisation schedule. There is no
scientific evidence to support the view that this vaccine
has a role in causing ASD.
31. What main issues do people
need to be aware of when working with Māori and Pacific
people with ASD, and their families/whānau?
When working
with people with ASD who identify as Māori, it is helpful
to:
appoint a kaiarahi or other appropriate
guide
develop and distribute all information packages
about ASD in a culturally appropriate format
develop
a strategy to improve the cultural competency of the
mainstream workforce to acquire knowledge and understanding
of Pacific cultural values and world views and appropriately
apply this to their work.
32. If the information in the
guideline contradicts advice I’m being given, or
information I’ve received from other sources, who can I
talk to about it?
Make contact with us through the ASD
0800 number (0800 ASD 222) or email
(asdguideline@moh.govt.nz). These are NOT help services, but
we will find people who can answer your queries.
33. How
does the guideline relate to the Service Standards which are
used by specialist education professionals?
The
guideline complements the Ministry of Education Service
Standards which have been developed to ensure all children
and young people with special education needs receive a
consistent quality specialist service. The Service Standards
were developed collaboratively by parents, students,
specialist service providers and educators from their
knowledge and experience.
Funding and promotion
34. How
much additional funding has been allocated to services for
people with ASD and their families?
$18.16 million from
Vote:Health, spread over the next four years from the
Ministry of Health. The Ministry of Education has $1.5
million per year for research, evaluation, professional
learning, and information sharing about ASD.
35. What
will this money be used for?
Our initial priority is to
scale up existing programmes and services that are proven to
be of benefit. I
36. Will everything in the guideline be
funded by the government to happen?
Key recommendations
will be prioritised within the existing budget.
37. Will
the release of the guideline result in more funding for NGOs
supporting people with ASD?
The funding will be allocated
to services that meet the key recommendations.
38.
The guideline is very technical. What are the ministries
doing to help translate it for the lay person?
Over the
next six months, we will be developing tips and tools for
parents, teachers and health professionals. We will involve
parents, teachers and health service providers in developing
these resources.
39. What are the ministries doing to
make sure health professionals, dentists, teachers, and so
on know about what’s in the guideline, and follow the
guideline?
We plan a direct mail to a range of
professional individuals and groups.
We will deliver presentations and workshops about what’s in the guideline to professional conferences around the country.
We will also run workshops from September this year for parents, health professionals, DHBs, teachers and Ministry of Education, Special Education staff. Training modules/credits will be developed as part of the annual professional development of practice nurses and GPs.
ENDS