Submission 76 — Early Start Australia — Select Committee on Autism | External submission

Department of the Senate

PO Box 6100

Parliament House

CANBERRA ACT 2600

16 July 2020

Dear Members of the Senate Select Committee on Autism,

Re: Inquiry into the services, support and life outcomes for autistic people in Australia and the associated need for a National Autism Strategy

Early Start Australia (ESA) is pleased to contribute to the Senate Committee’s inquiry on Autism services and supports. We would welcome the opportunity to contribute further to the Committee’s inquiry and the development of the National Autism Strategy.

ESA is a national organisational delivering evidence-based early intervention and therapy services to children and families. Our core therapy services include Occupational Therapy, Speech Therapy, Physiotherapy, Psychology and therapy for children with Autism Spectrum Disorder.

Headquartered in Perth, Western Australia, ESA currently has clinics in New South Wales,

Victoria, Queensland, Western Australia, the Australian Capital Territory and the Northern

Territory.

ESA serves clients and families in vastly different communities. This experience enables us to bring a particular perspective to working with children across disability, health and education services.

Our autism clinical leadership team includes Nicole Grant PhD in Queensland and Louise McCartney in Western Australia. Together they have prepared our submission which includes verbatim insights from several families, speaking about their own experiences and their child’s experiences.

In the last decade, Nicole Grant’s work has primarily been with children and adults on the autism spectrum. An Occupational Therapist, Nicole received her doctorate for her focus on parental decision making processes post autism diagnosis. Louise McCarthy is an Occupational Therapist who also holds a degree in Psychology. Louise is a Clinical Training Manager with Early Start Australia.

Yours sincerely,

Sasha Pendal

Chief Executive Officer

a. current approaches and barriers to consistent, timely and best practice autism diagnosis

In Australia there are significant differences in how Autism Spectrum Disorder (ASD) is diagnosed. This includes the assessments administered, professionals involved, and the expertise required by those professionals (Autism CRC, 2014). This has created confusion for individuals and parents seeking an Autism diagnosis and inequity between states and regions in the diagnosis and access to services for children and adults seeking supports.

The National Guideline for Assessment and Diagnosis of Autism (Whitehouse et al., 2018) was developed following extensive consultation with individuals with ASD, their families, clinicians and representatives from key peak bodies around Australia with the aim of providing a nationally consistent, ‘best practice’ approach to ASD assessment and diagnosis. This guideline describes best practice in assessment, provides a guide to assessment for differing levels of complexity and is supported by our organisation as a clear, measured and practical approach to Autism assessment in Australia.

However, the national guideline has not yet been successfully integrated into standard clinical practice across Australia. As a result, many families continue to have difficulty accessing accurate information regarding the process for ASD assessment once they, a child health professional or educator has identified concerns about their child’s development. As a provider of early intervention, childhood and youth services for individuals with ASD we receive frequent requests for support from parents looking to obtain an ASD assessment. Parents are often unclear about the role of different health professionals (e.g., paediatricians, psychologists, speech pathologists) in diagnosing ASD. There are also multiple referral pathways in some states (e.g., via GP, paediatrician, child health nurse, NDIS Early Childhood Pathway, or other health practitioners). This confusion leads to delays in accessing assessment services for children, a consequent delay in obtaining funding (via the NDIS) and in receiving effective early intervention services.

There is also a lack of clarity concerning the options for funding the assessment process (e.g., state-based health department assessment teams, disability assessment teams or Medicare funded private practitioners) and these options vary by state. Some state-based assessment services are ‘free’ for the family (e.g., WA Child Development Services, Department of Communities) while other services are partially funded via Medicare and require significant private funding from families. There are significant waitlists for both government and private provider assessment services. Currently, parents are reporting to our services wait times of up to 12 months for Government funded services and 3-6 months for private and non-for-profit (NT).

Accessing complex assessments (e.g., for girls, children with additional diagnoses like Down Syndrome) can also be a challenge in regions and territories. In the Northern Territory some families attending our service access private complex assessment services in other states (e.g., Queensland) as timely assessments are not available in their state.

ASD assessors working within the disability sector understand the importance of early diagnosis, both to gain access to funding (i.e., NDIS) and to access effective, intensive early intervention services. However, assessors working outside the disability sector (private practice paediatricians, state health department teams) are not always aware of the value of early diagnosis. It some states where we provide services, parents report that paediatricians prefer to ‘wait and see’ for a period before agreeing to completing an assessment, leading to children missing valuable opportunities for early intervention supports and causing significant frustration for families.

To inform our submission, we requested information from parents of children receiving services within our organisation about their experiences in accessing assessments. The following answer provides an excellent summary of the difficulties experienced by families, as one parent summarised:

The process with my 9 year old daughter commenced when early signs of Autism were noticed by friends and confirmed by her primary school. The school was great, advising to get a mental health plan from our GP. We were unable via Medicare to get appointment with psychiatrists, with an 18 month wait list via Medicare, so I chose to go private. After several appointments with a private psychologist, an Autism Diagnostic Observation Schedule (ADOS) was done & it was determined my daughter was level 2 on the Autism spectrum. We were then referred to several Paediatricians who specialise in girls with Autism, all of whom had long wait lists of over 12 months, so to get a diagnosis, I put my name down at several private Paediatrician clinics around Brisbane & was able to get an appointment with a male Paediatrician. The Paediatrician read the ADOS report, asked my daughter a couple of questions then diagnosed her as being level 1 on the Autism spectrum. I questioned why her ADOS determined level 2 on the Autism spectrum and the private psychologist sessions came to this conclusion, why he concluded level 1. He became defensive.

This whole process even with a mental health plan from our GP for Medicare rebates, my out of pocket cost was around $3,500 to get a formal diagnosis.

While assessments continue to be dispersed across the health, disability and private sectors with multiple referral pathways, individuals and parents will continue to carry the burden of coordinating and funding assessment and negotiating between disparate professional groups. We encourage the Committee to consider options for national coordination of assessment, potentially within the NDIA. This would support the implementation of the National Guideline on Autism Assessment and ensure all ASD assessing professionals answer to a consistent standard and diagnostic process and coordinate assessment services to remove the burden from families at a very challenging time.

RECOMMENDATIONS

We recommend that the National Guideline for Assessment be formally adopted as a clinical standard across all Australian jurisdictions and an appropriately targeted campaign be developed to improve take up of the guidelines by health professionals, including paediatricians, and funding bodies. This will encourage/support consistent, equitable access to ASD assessment and diagnostic services for all Australians.

We recommend a review of the funding arrangements between state and federal, health, disability and childhood services to ensure families can equitably access assessment in a timely manner. This should include an exploration of options for improving access to Autism assessments in rural and remote regions and a review of Medicare Benefits Scheme items and cost in relation to funding ASD assessment.
We recommend the development of a national approach to ASD assessment via the NDIS, allowing equitable funding across the country and a streamlined process for accessing NDIS services following diagnosis
We recommend a review of current waiting times for ASD assessment and the development of a National Strategy for Autism to include standards for reducing ASD assessment wait times.

d. international best practice with regards to diagnosis, support services and education, effectiveness, cost and required intensity

Early Intervention Services

There are a number of therapy approaches, strategies and programs with either established or emerging evidence of effectiveness for young children aged between 0 and 6 years diagnosed with ASD. These include behavioural (e.g., Applied Behavioural Analysis, or ABA), developmental (e.g., Responsive Teaching), and combined approaches (e.g., Early Start Denver Model, or ESDM). There are also a number of non-evidence-based and occasionally potentially harmful therapy approaches that are routinely promoted within Australia (e.g., diet restrictions, complementary and alternative medicine, restrictive practices including punishment). Each of the intervention types that have a strong evidence basis have well established treatment protocols, intensity/dose recommendations (typically between 12-15 hours per week) and training protocols for clinicians. Roberts and Williams (2016) provide a thorough summary of the current evidence base in their NDIS commissioned report on evidence based or informed supports for preschool children, families and carers. Information is also available for parents and carers on the Australian government funded parenting site, Raisingchildren.net.au.

However, there is currently little oversight or restriction regarding less evidence-based or potentially harmful practices within Australia for children with ASD and some clinicians and complementary medicine practitioners continue to promote and use these practices (Paynter et al., 2017). As a result, parents may not realise they are accessing a less effective treatment approach for their child and miss the opportunity for the key early intervention period. Across our clinics, we receive many referrals for children with ASD who have not accessed effective early intervention services and require significant support by the time they are at school to successfully participate, learn and engage with their family and community in a meaningful way.

Comparatively, some governments internationally have made steps to address this issue. In the USA, parents and children with ASD access funding via both government agencies and private insurers. While requirements vary by state, funding is typically released for authorised treatment packages based on evidence-based approaches only (e.g., ABA, ESDM). The qualifications of clinicians considered suitable to provide services are clearly specified and can include an expectation for supervised practice and/or training specifically in ASD services post graduate. Autism Speaks, a U.S based Autism Advocacy service, provides a helpful summary of

insurance coverage for ASD on their web page: https://www.autismspeaks.org/state-regulated-health-benefit-plans. New Zealand and the UK have detailed and clear guidelines for supporting children with ASD including standards and indicators for practice (e.g., NICE National Clinical Guidelines for Autism, 2014; NZ Autism Spectrum Disorder Guideline, 2016).

Services for school aged children Within our organisation, school aged therapy services aim to support children to improve participation and quality of life. Functional goals are chosen by children and families and typically include improving social skills and relationships, emotional and behavioural regulation, communication, independence, motor skills and academic performance. Therapists use a range of evidence based behavioural, cognitive behavioural and occupational approaches, including task analysis, and skill development, prompting systems, visual supports and environmental modifications. We measure improvement in performance and client satisfaction over time.

However, because much of the research that exists is focused on early childhood early intervention approaches, it is challenging for both clinicians and families to find evidence-based programs, particularly in the areas of social and emotional regulation and sensory supports. There is emerging evidence for interventions designed for older children, such as the PEERS program (Laugeson et al., 2012), recently showcased on ‘Love on the spectrum’ on ABC, and some evidence for sensory regulations programs like the ALERT program (Gill, Thompson Hodgetts, & Rasmussen, 2018) but generally evidence-based programs and interventions for older children (aged 7-18 years) are not readily available. More research is required for the development of evidence-based interventions for older children, and funding is required to evaluate the efficacy of these programs and interventions in improving function, participation and quality of life.

Furthermore, in our experience there are fewer providers and options for young adults (18-25) transitioning from school-aged services, particularly those who do not have an intellectual disability, but require support to participate in further education and training. Although there are many options for vocational support, there is less available for social skill development, and this is a significant barrier to successful participation in training and employment for many young people with ASD. Although we are a provider of paediatric services, we have extended our service for young adults to ensure they have support during this important transition.

Intervention outcomes It is important to note that intervention outcomes can vary between children with autism for a number of reasons, including intensity (dose) and mode of delivery of intervention (individual/ group sessions, home/ centre-based therapy sessions), as well as individual child characteristics such as age, cognitive/intellectual ability, social interest and responsiveness, joint attention skills, social referencing skills, language ability, motor and verbal imitation skills, presence of anxiety/ fearfulness, engagement in stereotypic and ritualistic behaviour, and potential presence of comorbid attention-deficit/ hyperactivity disorder (Thompson, 2011a). There is no one same presentation or response to interventions and service providers require a very specific skill set to ensure that intervention strategies are well targeted, and evidence based.

We believe service providers have a responsibility to set measurable goals, take objective data and report on outcomes so that families, clinicians and funders can be confident they are making meaningful progress and using the most effective intervention for their child and situation. There are examples from other industries within Australia and internationally, e.g.,

Australia’s Disability Employment Services Star Ratings measure and the Job Active Star Ratings

and Performance system, that allow comparison between services. The implementation of rating systems for both service providers and potentially treatment types would add accountability to the disability sector and provide individual families and funding agencies (i.e., NDIS) with better data for informed decision making regarding intervention.

Training for Clinicians and Service Providers

While there is training available to clinicians for specific intervention strategies (for example, many ESA therapists have some additional certification or training, such as Hanen, ESDM or ABA), it is not currently a requirement that therapists providing NDIS services to individuals with autism have any training beyond their foundational qualification e.g. Occupational Therapist or Psychologist. This means that there is currently little accountability for service providers, and autism service quality is largely unregulated. Participants often have little understanding of the difference between interventions or their possible harms and risks. Considering the complexity of the condition and the likelihood of vastly differing outcomes and need for tailoring of service delivery, we support the inclusion of additional training expectations for health professionals/clinicians providing therapy.

This training can include information on the diagnosis itself, evidence-based treatment approaches and the challenges and barriers experienced by individuals with ASD from their perspective. Encouragingly, a number of universities and professional associations have begun to provide training in this area (e.g., Occupational Therapy Australia ASD course for new graduates, Griffiths University Graduate Certificate in Autism Studies) and these efforts should be recognised and encouraged.

Internationally, the US provides a good example of options for standardised training and certification of clinicians (e.g., Board Certification in Behavioural Analysis, Certification for ESDM therapists). The qualifications of clinicians considered suitable to provide services are clearly specified and frequently include an expectation for supervised practice and/or training specifically in ASD services post-graduate in the US system. This system could be adapted via the NDIA Quality and Safeguards Commission provider registration and worker screening system.

RECOMMENDATIONS

We recommend that the proposed National Autism Strategy include clear guidelines and practice standards for health professionals working with children with Autism. Information for service users on the various evidence-based intervention options available, time required, funding options and cost should all be provided as part of this package.
We recommend a systematic review of evidence-based practices for school aged children and youth to ensure that the National Autism Strategy incorporates contemporary best practice and identifies gaps in the evidence for research. This aligns with Recommendation 18 of the 2019 review of the NDIS Act by the Department of Social Services.

We recommend the adoption of outcomes-based measurement and reporting by service providers as standard to ensure service providers are providing evidence-based, effective practices. This would allow the development of rating and performance systems across the sector in the future.
We recommend a requirement for additional post-graduate training for allied health professionals and supervised practice to ensure service providers have the skills and attributes to work effectively with the ASD population.

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; At Early Start Australia we work with state-based education and health departments to provide effective services and will focus on the interaction between health and education services in our response.

Education

In working with children with Autism we work on the goals important to each child, along with their family, in all aspects of life. Educational success is very important goal for many of our children and families. Our clinicians support children with communication, literacy, writing and typing, organisational skills, social skills and sensory, emotional regulation in addition to behaviour support. Therefore, schools are an important environment for therapy. However, within school-aged services we have noticed increasing challenges in providing services in schools across all states since the commencement of the NDIS.

As families have exercised greater choice and control, providers seeking access to schools have multiplied and many teachers have reported to us that they receive conflicting and confusing advice from different service providers regarding best practice. Schools have rightly stepped in to control who can access their school. However, this has led to increased difficulty providing supports to children at school and consequently pressure on organisations to provide services in limited out of school time slots and pressure on parents to leave their work to attend therapy sessions. Furthermore, NDIS has made a clear delineation regarding education-based goals, referring those goals to the Department of Education. There has not been a corresponding increase in therapy support or funding in education that we are aware of and as a result many of our clients do not have the support needed to ensure educational success.

At Early Start Australia, we continue to work with schools to promote the importance of access for therapists so that our clients can have the supports they require but we do this on a client by-client and school-by-school basis. There is no coordinated or consistent approach for service providers working within the NDIS, or disability sector. We would welcome the development of guidelines for providing supports in school along with information on who can provide services

in schools. A guideline on best practice in schools, similar to the Autism Toolbox funded and supported by Education Scotland, would be helpful for clinicians, educators and families as part of a National Autism Strategy. Information on outcomes and performance of service providers, such as that used by the Job Active system, would no doubt be helpful to schools in deciding which service providers may be most effective for their students.

Health

Children with Autism and their families face difficulties accessing mainstream health services from the point of diagnosis on. In several states ASD assessments are completed via the Health

system (e.g., Queensland Health, WA Department of Health Child Development Service) and

families then need to negotiate the transition between health and disability sectors. This has been complicated by the recent introduction of the Early Childhood or LAC pathway, where children are re-assessed before making their way through to an NDIS planner, and then finally finding a provider to commence services. In practice, this means that many families commence services with our organisation using their own funding while they make their way through the NDIS system. When delays occur within the health and NDIS system families at times spend several thousands of dollars on the therapy interventions they know their child needs before they access appropriate funding.

Difficulties continue for many of our families when their child is diagnosed with a mental health condition (e.g., anxiety) or physical condition (e.g., epilepsy) and requires support from mainstream health services. Parents frequently report to us a lack of understanding of autism within mainstream services, difficulty dealing with their child’s sensory needs or behaviour and increased time or resources from parents being required to access the services they need.

A parent in our service has written of her experience:

I scoured the internet in order to find out as much as I could about autism, from there I enrolled to Autism QLD and eventually the school found my son difficult to manage that they arranged to help provide funding for a limited period of time to send my son to a specialist school. I met many many roadblocks along the way, I found that a lot of the services I was able to access through the public health sector had no clue on what to do with us as a family and individual and that it involved multiple appointments with various people over a period of a couple of years at least of telling my story over and over again to the point that I began to feel exhausted. No funding was available for the first two years either before the NDIS was introduced and it was difficult.

To change or improve one thing about the process for finding services would be realising that what the neurotypicals may find as beneficial is not necessarily beneficial to those with autism. For example, my son was admitted to the child and youth mental health services, but despite the constant issues of school refusal and violence in the home, there was constant attention on me needing to learn parenting strategies which in the end did nothing to benefit us, and so it was a pointless exercise that did not fix anything, I had to fix it myself. The resources that were helpful were quite simply me trying and trying again and again until I found the right services that fitted us and met the goals of my two son’s and family. I also felt extremely isolated because I often faced much judgement from other parents on my son’s behaviour and despite saying he has

autism I felt many people in the public didn’t really understand much about it, it is ultimately a hidden disability.

There are guidelines for health professionals available, e.g., National Autism Society Guidelines (UK) and Royal Children’s Hospital Melbourne, that could be adapted and disseminated nationally as part of a National Autism Strategy to the benefit of both children with Autism, their families and health professionals from other sectors.

RECOMMENDATIONS

We recommend that the proposed National Autism Strategy include clear guidelines for supporting students with Autism within schools and educational settings.
We recommend the coordination between Health and NDIS systems to streamline ASD assessment, diagnosis and access to funding and services.
We recommend the proposed National Autism Strategy include clear guidelines for supporting individuals with Autism within health settings, including mental health settings.

g. the social and economic cost of failing to provide adequate and appropriate services, including to support key life stage transitions of autistic people;

In completing this response, we recognise the key findings in the economic analysis completed by Synergy Economics Consultants (2007), who comprehensively detailed the economic cost of failing to provide adequate and appropriate services for people with ASD.

In our experience working with children with ASD and their families, we see the tremendous effort many parents undertake to ensure their children have access to the supports and services needed for their children to thrive. Accessing intensive early intervention services, whether school or home-based, requires significant time and cost for parents. Many parents, especially mothers, face difficulty finding or maintaining employment that allows sufficient time to take their child to medical and therapy appointments. There is access to autism specific day-care services (e.g., Autism Specific Early Learning and Care centres in each state funded by Department of Social Services) but this option is only available for a small number of children living in within driving distance of those centres.

The difficulty accessing employment for parents continues when their children leave early intervention services and commence school, as they continue therapy services around schooling, liaise with school and medical appointments and manage increased school withdrawals associated with illness, behavioural and emotional difficulties.

We know that many families accessing services in our organisation have difficulty accessing afterschool supports for their children once they are high-school age

RECOMMENDATIONS

We recommend that the proposed National Autism Strategy include funding and support for additional/expanded specialist services within day-care and out of school hours care (OSHC) settings.
We recommend the development of clear guidelines and training for supporting children with ASD within day-care and OSHC settings, including training on meeting children’s sensory, emotional and behavioural needs

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;

Autism Understanding within the NDIS As an organisation we have supported clients in accessing the NDIS as the system has rolled in across Queensland, Victoria, Northern Territory and WA. We have also supported clients in the ACT and NSW where the NDIS model has evolved over several years. As expected in an undertaking as large as this, there have been teething issues, but we, along with participants and their families, disability organisations, and peak industry bodies (e.g., National Disability Services) have worked hard with the NDIA to improve systems, processes and outcomes for individuals using the scheme.

One key challenge for our organisation has been in relation to the lack of understanding regarding the needs of individuals with Autism within the NDIA. In our experience, many NDIS planners have little or no expertise or training in ASD and are not always aware of the difficulties faced by children with ASD as they make their way through early childhood, school and beyond. To further complicate matters, the screening tool initially used to guide funding decisions for children, the Paediatric Evaluation of Disability Inventory- Computer adaptive test (PEDI-CAT) does not provide a good assessment of the needs of children with Autism, particularly in regard to social, emotional and communication needs. A revised version, the PEDI-CAT for ASD is available but we do not believe it is currently being used. Scoring from the PEDI-CAT is used by planners to guide decision-making around funding levels and this can disadvantage children with ASD who have the capacity to make great gains via therapy. In our experience. difficulties with this assessment have led to children with very similar needs being provided with plans with significantly different budgets and goals.

Furthermore, the process of accessing the NDIS, via assessment and diagnosis of ASD, assessment for eligibility within NDIS, entrance via a LAC or Early Childhood Partner, NDIS planning meeting and then the search for a registered provider in the local area with availability, is often drawn out and very frustrating for families and it can take months before they are able to commence services with a provider.

One of the parents attending our service summarised their experience below:

Initially, the process to have (my child’s) treatment NDIS funded was difficult. After initially applying, then completing all the forms & providing the medical documentation, I called several times & was told they had a backlog of NDIS assessments waited around 3 months before I was sent a letter more different documents to complete & return. I did this & called several times & was told they had a backlog of NDIS assessments waited around 2 months before I was sent a letter more different documents yet again to complete & return. I was finally contacted & in the discussion was asked for more information, which I supplied. I then received a letter telling me I was unsuccessful in receiving NDIS funding. I called to lodge an appeal to this decision & this appeal was successful. The whole process to have NDIS funding for treatment took around 8 months & was very frustrating.

After NDIS funding was approved, the planning process I found to be brilliant, the person I had listened to my concerns & was very helpful in putting together a plan for treatment after we went through (my child’s) reports from her Psychologist & GP.

Now she needs to be re-assessed by the NDIS & this process has only just began so I’m not sure how this experience will be & if I will need to go through what I went through earlier? I have arranged for reports on her needs from her Psychologist, Speech Therapist & Occupational Therapist. Unfortunately, these assessments & reports will use the remaining NDIS funding, so therapy is now on hold until hopefully further NDIS funding is granted, as it’s now mid-June & (my child’s) NDIS plan commenced mid-September, Autism therapy plan via NDIS will be now be on hold for at least 3 months.

Early Intervention and the Early Childhood Pathway

There has been some improvement in service access with the commencement of the early childhood pathway (ECP) but this improvement has been uneven across ECP providers. Our families arriving through the ECP have reported that ECP clinicians have a better understanding of ASD but still do not understand the specific evidence base for intensive early intervention. In our experience as an NDIS registered provider the recommended 12-15 hours of therapy services per week for early intensive intervention is not funded in plans for children with ASD (although this has started to change in the past six months). The majority of plans for children with ASD in our organisation contain between $16,000 and $20,000 for capacity building (early intervention), covering between 2 and 4 hours a week during school terms. This is very concerning as the evidence regarding intense early intervention is clear, has been established over many years, and has been recommended as best practice to the NDIA by most peak Autism bodies within Australia.

The process for requesting a review to obtain appropriate funding is onerous and few families receiving services with our organisation have felt able to undertake the review process. Parents

who are well-resourced (i.e., have professional qualifications, time and money) are able to appeal and obtain additional funding for up to 20 hours but this is not then generalised to other families with the same needs. ESA agrees with a key finding of the 2019 Review of the NDIS Act that the Act should be amended to provide more flexibility for the NDIA to fund early intervention support for children under the age of 7 years outside an NDIS plan, in order to develop family capacity, support access to the NDIS and streamline access to services.

Additionally, since the introduction of the Early Childhood Early Intervention pathway through NDIS, there has been a significant increase in the number of parents reporting Paediatricians are stating that a diagnosis is not needed until a child is 7 years old. This has the unfortunate consequence of making access to the NDIS more difficult for some families and impedes the ability of families and therapists to request early intensive services specifically recommended for children with ASD diagnoses.

Plans for school-aged children In our experience, NDIS plan budgets reduce after the initial two to three NDIS plans and children entering school aged services frequently receive minimal funding for therapy supports. Plan budgets for capacity building (therapy supports) are frequently between $6000 and $11000 (equating to approximately 1-2 hours a week) and this is not sufficient for many children attending mainstream schooling. It’s important that the Senate acknowledges that autism is a lifelong condition, and that the needs of individuals with autism changes as they progress through life. For example, the transition to primary school and then high school can be particularly challenging as there is an adjustment to new people, new environments and new routines. The transition into the workforce is an equally stressful time. Once in the workforce, people with autism can experience challenges with maintaining employment due to interpersonal difficulties, inability to self-regulate during periods of stress, difficulties with communication (following instructions), executive functioning difficulties (e.g. poor motivation, poor judgement) and more. While early intervention remains crucial, therapy needs continue on beyond the early years, and must be adequately funded.

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;

Available choices for parents of children diagnosed with autism are unclear and confusing NDIS participants are empowered to exercise choice and control, however for those participants with autism or who are making decisions for a person with autism, the choices are often unclear and confusing. Following diagnosis, parents search for information on autism interventions from a range of sources (Mackintosh, Myers, & Goin-Kochel, 2005; Valentine, et al., 2010). Studies that have used parent interviews and questionnaires (including one study undertaken by one of the co-authors) found that parents obtain information from many (in some cases as many as seven) different sources including other parents, friends or family members, professionals, print materials, workshops/ meetings and the Internet (Grant et al, 2016; Mackintosh, Myers, & Goin-Kochel, 2005; Valentine et al., 2010).

Parents of children with autism are required to choose from hundreds of intervention options There are hundreds of interventions that claim to assist children with autism (Green et al.,

2006). This large number of possible interventions, some offering cures, adds to the confusion faced by parents in making decisions about which is right for their child. Several studies demonstrate that parents trial on average five (5) to seven (7) different interventions at any one time (Bowker et al., 2010; Green, et al., 2006), with parents of children with more severe autism characteristics trialling an even greater number of interventions (Green et al., 2006). This trial and error approach deplete available funding and can mean that the window of opportunity for early intervention can close before the right intervention is found. Parents must be better supported to make good decisions about interventions for their child. It’s important that information about autism interventions and other supports be available in a range of formats to cater for the many different ways individuals prefer to receive information.

RECOMMENDATIONS

We recommend that the NDIA adopt the PEDI-CAT ASD for planning assessment for children with ASD if it has not already done so
We recommend a streamlined ECP for children with ASD, many of whom have already accessed expensive and time-consuming assessment processes and are ready to commence therapy
We recommend guidelines for practice for Early Intervention be formally adopted by NDIA in relation to early childhood services, including recognition of the unique evidence for intensive early intervention services.
We recommend the inclusion of clear information on NDIS access for individuals with autism and other stakeholders (e.g., paediatricians operating outside the NDIS/disability sector) to ensure ease of access to services within the NDIS

I. Development of a National Autism Strategy. We strongly support the development of a National Autism Strategy, with the aim of providing a consistent, evidence-based approach to Autism Services and Supports nationwide. To be useful, this National Strategy must include collaboration between all government departments, including health, disability, education, and social services.

References

Gill, K., Thompson-Hodgetts, S., & Rasmussen. C. (2018) A critical review of research on the Alert Program®. Journal of Occupational Therapy, Schools, & Early Intervention, 11:2, 212 228, DOI: 10.1080/19411243.2018.1432445.

Green, V. A., Pituch, K. A., Itchon, J., Choi, A., O’Reilly, M., & Sigafoos, J. (2006). Internet survey of treatments used by parents of children with autism. Research in Developmental Disabilities, 27 (1), 70-84.

Laugeson, E. A., Frankel, F., Gantman, A., Dillon, A. R., & Mogil, C. (2012). Evidence-based social skills training for adolescents with autism spectrum disorder: The UCLA PEERS program. Journal of Autism and developmental Disorders, 42:1025-1036. DOI 10.1007/s10803-011-1139-1.

Mackintosh, V. H., Myers, B. J., & Goin-Kochel, R. P. (2005). Sources of information and support used by parents of children with Autism Spectrum Disorders. Journal on Developmental Disabilities, 12(1), 41-52.

Ministries of Health and Education. 2016. New Zealand Autism Spectrum Disorder Guideline (2nd

edn). Wellington: Ministry of Health. First published in March 2008, 2nd edition. https://www.health.govt.nz/system/files/documents/publications/nz-asd-guideline-aug16v2 0.pdf.

National Institute for Health and Care Excellence (2014). Quality Standard QS51: Autism. https://www.nice.org.uk/guidance/qs51/resources/autism-pdf-2098722137029.

Paynter, J.M., Ferguson, A., Fordyce, K., Joosten, A., Paku, S., Stephens M., Trembath, D & Keen, D (2017). Utilisation of evidence-based practices by ASD early intervention service providers. Autism, 21, 167-180.

Roberts, J., & Williams, K. (2016). Autism spectrum disorder: Evidence-based/evidence-informed good practice for supports provided to preschool children, their families and carers.

Taylor, L., Brown, P., Eapen, V., Harris, A., Mayberry M., Midford, S., …Whitehouse, A. (2016). Autism spectrum disorder diagnosis in Australia: Are we meeting best practice standards? Aytusn CRC: Brisbane.

Thompson, T. (2011a). Individualized autism intervention for young children blending discrete trial and naturalistic strategies. Baltimore: Paul H. Brookes Pub.

Valentine, K. (2010). A consideration of medicalisation: choice, engagement and other responsibilities of parents of children with autism spectrum disorder. Social Science & Medicine, 71(5), 950-957.

Valentine, K., Rajkovic, M., Dinning, B., & Thompson, D. (2010). Occasional Paper No. 35 Post diagnosis support for children with Autism Spectrum Disorder, their families and carers. http://www.fahcsia.gov.au/about/publicationsarticles/research/occasional/Documents/op35 /OP35.pdf

Whitehouse, AJO, Evans, K., Eapen, V., Wray, J. A national guideline for the assessment and diagnosis of autism spectrum disorders in Australia. Cooperative Research Centre for Living with Autism, Brisbane, 2018.