DISCUSSION PAPER.
SELECT COMMITTEE ON
AUTISM - ISSUES AND
RECOMMENDATIONS.
AUTISM ADVISORY AND SUPPORT SERVICE
88 MEMORIAL AVE LIVERPOOL NSW 2170
APRIL 2019
Autism Advisory and Support Service (AASS) are a grass roots not for profit community organization who support families on a daily basis through the journey of having a child with disabilities, especially an Autism Spectrum Disorder. We also offer a multi disciplinary approach to therapies and supports for each individual, depending on their needs and those of the family. This is in line with the true spirit of the NDIS. Choice and Control.
While in theory the NDIS is a wonderful scheme that has supported many, the reality in our area of Liverpool and surrounding local government areas, is quite different. Our daily experience with participants is one of vulnerability, increasing complex behaviours and families not coping able to access meaningful services in a timely manner.
AASS, through the families we support and serve, have experienced a number of issues and anomalies. Each NDIS experience and funding plan is subjective. If one has a planner who understands and listens to each experience, then the outcomes are more favorable than those who have planners who need to Google the disability during the planning meeting. We have also experienced a number of administrative issues that are frustrating and time consuming as well as NDIS questions that are based on the needs of those with a physical disability, not an invisible one as Autism is.
Individuals with Autism can fulfil their potentials and offer a more innovative and interesting perspective to the community if we can ensure the foundation of supports are underpinned by an understanding of their needs. As the highest represented disability on the NDIS and one of the most complex, we have a duty of care to ensure individuals’ needs are met in a timely and meaningful manner. We must also remember that in order to receive the best outcomes for the participant with Autism, the family must be well educated and supported to meet their loved ones needs.
As a service provider at the coal face, we hope to be part of this process and work with you to offer real time insight and experience.
Grace Fava OAM
Founder/CEO
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On 27 November 2019, the Senate resolved to establish a Select Committee on Autism to inquire into and report on the services, support and life outcomes for autistic people in Australia and the associated need for a National Autism Strategy, with particular reference to:
a) current approaches and barriers to consistent, timely and best practice autism diagnosis; b) the prevalence of autism in Australia; c) misdiagnosis and under representation of females in autism data, and gender bias in autism assessment and support services;
d) international best practice with regards to diagnosis, support services and education, effectiveness, cost and required intensity;
e) the demand for and adequacy of Commonwealth, state and local government services to meet the needs of autistic people at all life stages;
f) the interaction between services provided by the Commonwealth, state and local governments, including:
i. health and mental health, ii. education, iii. employment, iv. justice, and
v. housing; g) the social and economic cost of failing to provide adequate and appropriate services, including to support key life stage transitions of autistic people;
h) the adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for autistic people, including:
i. autism understanding within the NDIS ii. the utility of the Early Childhood Early Intervention Pathway for autistic children iii. the ability of the NDIS to support autistic people with complex needs, including those transitioning from prison settings, and iv. the adequacy and appropriateness of supports to empower autistic people to participate in the NDIS planning process, and exercise self-determination through choice and control over their support services;
i) the development of a National Autism Strategy and its interaction with the next phase of the National Disability Strategy;
j) the adequacy of funding for research into autism; k) the social inclusion and participation of autistic people within the economy and community; l) the capacity and sustainability of advocacy, self-advocacy and self-determination supports for autistic people, including mechanisms to self-represent to government as enshrined in the
United Nations Convention on the Rights of Persons with Disabilities
m) any bill that relates to matters within the scope of this inquiry that is referred to this committee; and
n) any other related matters. The committee is to present its final report on or before the first sitting day of October 2021.
The resolution establishing the committee is available in the Journals of the Senate No. 30 Wednesday, 27 November 2019.
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Issue Recommendation
a. current approaches and There is no consistency to current Best practice should be a
barriers to consistent, timely diagnostic practices although a national multi-disciplinary approach
and best practice autism guideline was released by the Autism with a pediatrician,
diagnosis CRC psychologist and
(https://www.autismcrc.com.au/knowle Occupational or Speech dge-centre/resource/national-guideline Therapist. An assessment for any comorbid issues should occur at the same time to save time/money and prevent treating the child’s needs in a disjointed way Diagnostic funding should be available across the lifespan and not only for the early intervention age group.
b. the prevalence of autism in The current statistics for Autism in Allow databases in Centerlink
Australia Australia are out of date and incorrect due and NDIS to use all diagnoses
to methodology of collecting the statistics in finding statistics. and primary issue (under NDIS and A separate Autism database
Centrelink)
Data from the NDIS may not be an accurate picture as people with autism can have an intellectual disability and are sometimes advised during planning meetings that an Autism diagnosis does not attract a significant amount of funding so they say the primary disability is Intellectual Disability.
c. misdiagnosis and under Females with Autism Spectrum Disorder Consistent and
representation of females in may get misdiagnosed because the way comprehensive training guide
autism data, and gender bias they present may be different with regards for diagnosis of girls
in autism assessment and to restricted / inflexibility of behaviors and Training for professionals in
support services; other internalized behaviors. differentiating Autism in the
sexes
d. international best practice Canada:
with regards to diagnosis, “In most provinces and territories, only Have all community nurses
support services and physicians or psychologists are licensed trained in Autism traits in
education, effectiveness, to diagnose autism spectrum disorder males and females to flag any
cost and required intensity; (ASD) [1]. In some communities, concerns with parents.
appropriately trained nurse practitioners Diagnosis by multidisciplinary
may also make this diagnosis. Emerging team consisting of evidence suggests that a trained sole Pediatrician and/or
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practitioner can diagnose less complex Psychologist and allied health cases of ASD [1]–[4], yet most clinical professional (speech or guidance documents recommend a team- occupational therapist)
based approach, led by a primary care Include testing for
provider, paediatric specialist, or clinical intellectual/developmental child psychologist who is trained to delay at the same time as well diagnose ASD [1][3]–[15].” From as any other comorbid https://www.cps.ca/en/documents/position concerns
Diagnosis to be free across /asd-diagnostic-assessment, accessed 16
December 2019. the lifetime of the participant to capture any ongoing The American Academy of Pediatrics concerns that may arise. recommends that all children be screened for developmental delays and disabilities during regular well-child doctor visits, namely, at 9 months, 18 months, 24 or 30
months. The American Association for Child
and Adolescent Psychiatry recommends ASD surveillance at all developmental and psychiatric assessments of children, ASD specific screening Modified Checklist for Autism in Toddlers (e.g., M-CHAT) at 18 and 24 months visits or when surveillance raises concern. If the screening indicates significant ASD symptomatology, a thorough diagnostic evaluation is essential. Evaluation should include multi-disciplinary assessment with the clinician coordinating it. Diagnostic instruments commonly used: Autism
Diagnostic Observation Schedule (ADOS),
Autism Diagnostic Interview, and Diagnostic
Interview for Social and Communication Disorders. The use of such instruments only supplement, but not replace informed clinical judgment. Early screening, however, is recommended to intervene early [Tables [Tables33 and and44].
e. the demand for and Currently there is no cohesive approach to Extend the HCWA option to
adequacy of providing supports for people with Autism anyone with an Autism
Commonwealth, state and Spectrum Disorder across the lifespan. diagnosis waiting for NDIS
local government services to Medicare funds 20 one off HCWA items support.
meet the needs of autistic for under 15’s and there are up to 10 Better people at all life stages; Mental Health and 5 Chronic Disease Management items that can be accessed.
With the introduction of the NDIS, therapy Introduce an immediate
supports are available but other supports safety net for families in crisis. that enable families to continue to provide
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care for their children and enhance their Organisations funded for this
capacity as carers are not usually are to offer immediate and supported. Some children are relinquished meaningful supports to the and in cases where there is crisis, there is a whole family to ensure long long wait to access supports at a State term family preservation.
level. Safety net providers to offer
NDIS reviews with priority access to the NDIA.
Adults with Autism struggle to find Training for providers in
services experienced in meeting their Autism in adults. needs. Historical focus has been on pediatric Autism with services ending at age 18.
Adults with autism are the highest Meaningful jobs to be found
represented amongst the under employed Government
members of the community. incentives/directives to utilize the skills that individuals with Autism have to offer.
The current NDIS guidelines are subjective A new set of questions that and criteria/questions are geared towards are directed to participants participants with a physical disability. with an Invisible disability to ensure meaningful and relevant information is gathered.
Uncertainty around funding of supports for Clear policy on financial
Children in the care of the Minister. responsibility for out of home Participants under the care of the Minister care children.
(out of home care) are caught in a financial Clear guidance on what the
tug of war between NDIS and FACS as to NDIS will fund and what which department is financially responsible FACS/Agencies are to fund items of need. responsible to pay.
f. the interaction between There is no cohesive or streamlined process increase advocacy services
services provided by the between different government departments funding to develop an agency
Commonwealth, state and (Federal, State or Local). Often, it is a who will care for all issues
local governments, battle between who has the responsibility to related to having a diagnosis
including: provide supports between health, education of Autism.
a. health and mental and disability. People who are Increase of support
health, disadvantaged continue to be more coordination for vulnerable
b. education, vulnerable especially if there is no one to families as outlined.
c. employment, advocate for their needs. Their barriers
d. justice, and include diverse cultural, linguistic and
e. housing; socio economic backgrounds, carers with
disabilities, other co morbid conditions and mental health difficulties, low socio
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economic background. Without an advocate, they fail to access crucial supports.
There is an increase in participants with complex care needs whose needs often cross over into one or more government departments. With a decrease in advocacy funding and even support coordination, participants find it difficult to find an agency to address their needs in a holistic fashion leading to bandaid and fragmented solutions.
g. the social and economic cost Most individuals with Autism struggle with Ongoing support and
of failing to provide change and transition to various life stages. diagnosis under NDIS
adequate and appropriate Understanding and support
services, including to that anxiety underpins the support key life stage life of individuals with transitions of autistic people Autism.
Many individuals with Autism want to live Integrating supported
independently however they require on the independent living spot support and guidance. accommodation for individuals with Autism into retirement villages.
h. the adequacy and efficacy of
the National Disability
Insurance Scheme (NDIS)
for autistic people, including:
i. autism understanding within the NDIS Each person with Autism has their own unique circumstances. As a result we A tiered approach will ensure
ii. the utility of the Early cannot fund Autism generically. true choice and control per
Childhood Early discussion paper. Intervention Pathway for There is NO safety net for those in crisis. autistic children, FACS no longer recognise the word
relinquishment, instead pushing for the Establishment of an Autism
NDIS to fund in home supports. arm of the NDIS with members at the grassroots level of service.
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iii. the ability of the NDIS LAC/NDIS staff for the most part have
to support autistic people little or no understanding of participants NDIS questions to determine
with complex needs, needs. They do not know how to ask the needs of those with
including those questions to extract purposeful answers in invisible disabilities like
transitioning from prison order to reach a meaningful and workable Autism.
settings, and plan. Training for staff to better
Access to the NDIS complex care pathway understand Autism and the is difficult and subjective. needs at all stages of life Rid NDIS plans of capped funding Easier transition into the NDIS complex care pathway
iv. the adequacy and see discussion paper
appropriateness of supports to empower autistic people to participate in the NDIS planning process, and exercise self determination through choice and control over their support services;
i. the development of a
National Autism Strategy
and its interaction with the next phase of the National
Disability Strategy
j. the adequacy of funding for More research is needed for adults with Funding for meaningful
research into autism Autism including post school options and research into these areas
best practice for tertiary education. More research is required into education for children with Autism – the best practice for class numbers, pedagogy, and alternatives for those with complex needs.
k. the social inclusion and Currently we are forcing individuals with better research into best
participation of autistic Autism into a school system and workforce practice for education and
people within the economy that does not understand nor cater to their workforce
and community individual needs. comprehensive and ongoing
Education should have a foundation of training for teachers on “show me don’t tell me”. Autism
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Individuals with Autism have capacity to inclusive workforce training
do more than pack shelves in a supermarket and campaign to highlight yet for many schools and service providers the benefits of employing it is an easy “tick a box” solution. individuals with Autism training around providing Each individual has the right to choose an supported and inclusive employment pathway that engages with workplaces
their passions. create suitable supported
environments to ensure We need a culture change to show the optimal positive outcomes potential that a diagnosis of Autism can both educationally and in the bring. Autism diagnosis is the highest workforce. represented disability for unemployed.
l. the capacity and Funded advocacy is poor in relation to the More funding for Autism
sustainability of advocacy, community need. specific advocacy groups
self-advocacy and self- Training for Agency staff on all disabilities Training for individuals with
determination supports for especially Autism and related Autism to increase self
autistic people, including comorbidities should be mandatory so there advocacy capacity
mechanisms to self-represent will be better understanding of issues and to government as enshrined more positive outcomes for those in the United Nations advocating. Convention on the Rights of
Persons with Disabilities
m. any bill that relates to matters within the scope of this inquiry that is referred to this committee; and
n. any other related matters 8