Inquiry into services for people with autism spectrum disorder Occupational Therapy Australia (OTA) Submission | External submission

Submission No 114

INQUIRY INTO SERVICES FOR PEOPLE WITH AUTISM SPECTRUM

DISORDER

Organisation: Occupational Therapy Australia (OTA)

Date Received: 22 April 2016

Submission $114

Received 22/04/2016 ; Family and Community Development Committee Occupational

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Parliament of Victoria Family and Community Development Committee

Inquiry into services for people with autism spectrum disorder

Occupational Therapy Australia (OTA) Submission

April 2016

Contact:

Kim Mestroni, Victoria Division Manager Occupational Therapy Australia

Occupational Therapy Australia Limited ABN 27 025075008 | ACN 127 396 945 VIC Division 5/340 Gore Street Fitzroy VIC 3065

+61 39415 2955 | F +61394161421 | E info.vic@otaus.com.au | W www.otaus.com.au

INTRODUCTION

Occupational Therapy Australia (OTA) welcomes the opportunity to submit to the Family and Community Development Committee’s Inquiry into services for people with autism spectrum disorder (ASD) in Victoria.

Occupational Therapy Australia is the professional association and peak representative body for occupational therapists in Australia. As of December 2015 there were more than 4000 registered occupational therapists working across the government, non-government and private and community sectors in Victoria. Occupational therapists are allied health professionals whose role is to enable their clients to participate in meaningful and productive activities.

Occupational therapists study human growth and development and a person’s interaction with the environment through daily activities. They are experts in the social, emotional, and physiological effects of illness and injury. This knowledge helps them to identify the factors that are important to address with each individual as they promote skills for learning and independent living in people with ASD. Therapy often focuses around social interaction, behaviour, work or classroom performance and independent living.

This submission addresses a number of the Inquiry’s Terms of Reference by providing an overview of funding arrangements and outlining the current problems with service coordination. The submission also makes a number of practical, cost-effective recommendations to improve service delivery for people with ASD in Victoria and to ensure that they receive the support they need in a timely manner.

SUMMARY RECOMMENDATIONS:

Funding for effective cross-sector case management arrangements to coordinate services for people with ASD.
Establishment of clear referral pathways for GPs to improve access to services for people with ASD.
Disability Employment Services (DES) engage and utilise ASD specialist staff (such as occupational therapists) in the design and oversight of ASD funding.
Funding for programs to promote and support the employment of people of ASD.
The establishment of a formal relationship between the Victorian Government and the NDIA to ensure effective coordination of services.
The allocation of State Government and NDIS funding according to functional educational, work and psychosocial needs rather than a specific diagnostic category.

CONTEXT:

The Inquiry into services for people with autism spectrum disorder was announced last year and is currently being undertaken by the Family and Community Development Committee of the Victorian Parliament.

Autism spectrum disorders are defined as “neurodevelopmental disorders that cause substantial impairments in social interaction and communication and are associated with unusual behaviours and interests” (Department of Human Services, Victoria, 2009). People with ASD can suffer from a number of secondary conditions, such as speech and language difficulties. Approximately 50 per cent of people with ASD also have an intellectual disability. There is no known cause of ASD, and diagnoses are based on behavioural patterns rather than a specific test. Boys are four times more likely to be diagnosed with ASD than girls.

There are currently around 55,000 Victorians affected by ASD. With full rollout of the NDIS in Victoria fast approaching, now is the time to ensure that services are properly coordinated and easy for consumers to navigate. The number of NDIS participants in Victoria will increase dramatically in the coming months, and it is critical that the scheme is able to provide individualised support to participants while remaining economically sustainable. The remainder of this submission outlines the key issues in relation to current service provision and coordination for both children and adults with ASD and their families.

Occupational Therapists have a key role supporting Victorians of all ages living with ASD.

Problem #1: AVAILABILITY & ADEQUACY OF CURRENT SERVICES - Children

Current state and federal government funding for services, based upon age and narrow diagnostic eligibility criteria, does not meet the needs and address the very nature of the challenges of individuals with ASD. Fragmented and inequitable systems of access to funding and to services for both children & adults with ASD, outlined below, results in unintended consequences, such as the withdrawal of services at age seven for children with ASD who have previously been eligible.

Under current arrangements, the eligibility criteria for increased supports for school aged children with ASD is inappropriate, resulting with a broad range of students with ASD not receiving adequate supports to be educated in an appropriate learning environment to meet their learning needs.

Funding opportunities for children with ASD in Victoria currently comprise of a matrix of schemes arising from different levels of government with different eligibility criteria. For example, the Commonwealth Helping Children with Autism (HCWA) Program enables children with autism funding for allied health assessment and treatment services until age seven. The eligibility criteria for this funding differs widely from that of the Victorian state based Program for Students with Disabilities (PSD) funding. This results in a significant proportion of children who have received early intervention funding under the federal HCWA program being deemed ineligible for school support funding via Victoria’s PSD as they commence primary school. The effect of these inconsistent funding criteria is that many children with ASD who

have previously been eligible for funding for therapy services are no longer eligible. Of further concern is the additional effect that children who have not been diagnosed with ASD until school age often miss out on funding and therapy altogether as a result in Victoria.

Excluded from services are a significant proportion of students with ASD who require additional supports to communicate and develop social and emotional regulation skills both within and outside the school environment.

Occupational therapists who work with this population report:

“State funded services I have worked in stopped providing a service to children with Autism as it was expected they would receive services through the Commonwealth support through FaCHSIA or accessing a Medicare rebate.”

“Limited funding and supports for children with ASD who are high functioning particularly in the area of social participation can have a huge impact on mental health, school participation and later work participation.”

In Victoria, in many cases schools are left to consider funding for support for children with ASD from the general Student Resource Package for those who do not fit the narrow PSD funding criteria. Regardless of the source of funding, schools in Victoria vary widely in the ways that they choose to meet the educational needs of students with ASD, as this is dependent upon the expertise that is available within each individual school.

In some cases parents must fund any supports that their children receive. Occupational therapists report that in cases such as these further barriers are created by Victorian DET guidelines which preclude non-DET funded therapy provided in the mainstream school environment.

Plans for the NDIS in Victoria, and implementation in the Barwon region, indicate that disability and school therapy services for children with ASD will remain separate. The potential therefore exists for school aged students with ASD to continue to be faced with fragmented funding arrangements and to be disadvantaged by a small number of funded services in a state education system which assesses need against inappropriate criteria for this population. This will be expanded upon under the section discussing ‘problem #2’ below.

Quach et al 2015, cited in the recent “Bracks review”, Greater returns on Investment in Education. Government Schools Funding Review, released April 2016, supports this recommendation in the statement:

“Research suggests that the diagnostic criteria underpinning the PSD are not necessarily aligned to meeting the learning needs of individual students, and that a more effective use of funding would be to consider a student’s functional needs – that is, their needs in relation to body function, daily living skills, social and educational participation.”

Recommendation:

Victorian Government implement a funding model that recognises the nature of the challenges faced by people with ASD. For this population this model must therefore

be based upon functional, educational/work and psychosocial need, encompassing the following principles:

cross sector - including consistent criteria for people with ASD who will inevitably have needs related to both educational and functional domains;
co-ordinated - to reduce confusion and overlap and fragmentation as people access funding and services when their needs intersect with other arrangements such as the NDIS;
person-focused - to ensure that the funding priority rests upon meeting the needs of individuals with ASD. Under a person-centred funding model, services will require an agile service delivery approach, and flexible service arrangements which communicate and coordinate with other services;
not age dependent - crucially, funding needs to be available for people with ASD of all ages, as the nature of this group of disorders means that the impact of functional impairments, and corresponding need for services, may emerge at different stages of life for different people. People whose need for services is not identified in the early stages of life should not be disadvantaged.

Problem #2: AVAILABILITY & ADEQUACY OF CURRENT SERVICES – Adults

Inadequate funding and supports for adults with ASD – particularly for assistance with employment options.

Funding and availability of therapy services for the adult population with ASD in Victoria needs to be reviewed and expanded. Adults comprise approximately 75 % of the population of people with ASD, yet attention is rarely paid towards services to support their participation in employment housing/independent living, and also sport and leisure-focused programs.

ABS labour force participation statistics indicate that, in 2012, the labour force participation rate for people with ASD was 42%. This compares with 53% labour force participation rate for people generally with disabilities, and 83% for people without disabilities. This, therefore, is a productivity issue in addition to an education, health and disability issue because of its impact on the participation rate for the workforce and because of its impact on workforce productivity when the needs of individuals with ASD are not recognised and addressed in workplaces.

Federal and state governments currently place emphasis on early intervention services for children with ASD. Although evidence supports the benefits of this approach, a true recovery on the current government investment in services and supports for children with ASD in the early years is not realised when government neglects to consider the supports that are also required as these individuals reach work age.

Existing employment supports are commonly targeted for individuals with intellectual disabilities. Although some people with ASD and intellectual disabilities can be eligible for this type of support, commonly those individuals who are classed as having ‘higher functioning ASD’, are left with little to no employment services support. These individuals may experience significant challenges in areas such as the social aspects of work environments, but can often

be highly focused and skilled at niche tasks. These are often also the group of people with ASD who have completed a high level of education, and have developed knowledge and skills that, in theory, equip them to enter the workforce. Appropriate strength-focused supports devoted to this group of individuals can ensure that talented people who have valuable skills to offer to the workforce are not overlooked.

Importantly, government initiatives to engage the adult population of people with ASD in the workforce will have the economic benefit to re-focus on the unmeasured, but likely to be significant, pool of talent that is currently being overlooked by employers. It will also have the effect to increase the productivity for individuals who previously may not have contemplated a work career, whilst decreasing reliance on social services for these same individuals.

Occupational Therapists working with adults with ASD report:

“… Individuals with Autism also have significant strengths and I feel that currently we could do more to support these individual access and contribute to the work force.”

“My experience is that there are limited opportunities to engage young people who are on the Autism Spectrum and have completed higher education to access the workforce where their executive functioning and social challenges can make fit to the work place challenging.”

Public awareness and understanding amongst employers of the nature of ASD, including the potential advantages and challenges of employing a person with ASD, is generally poor. This lack of knowledge about the social/emotional and communication challenges that are characteristic of individuals who have ASD are a significant barrier to these individuals’ acceptance and their potential to participate in a meaningful and ongoing way in the workforce.

Added to the difficulties encountered in seeking and maintaining a position in the workforce is the inherent social challenges experienced for people for ASD, often meaning that they often have limited social contacts to make inroads in to a workplace. Limited interpersonal skills also can impede their ability to convey their strengths related to a potential position in which they may be well suited.

Occupational therapists working with people with ASD report:

There is a deep lacking in services to support individuals with ASD to access viable employment, particularly for those with intellectual impairments. Some employers are supportive but don’t get support to assist them in training people with ASD.

Significant productivity efficiencies in employment can be gained by recognising and providing appropriate employment services for people with ASD. These services need to address the differing individual needs of both those with ASD and intellectual disabilities, and also those with “high functioning ASD”.

Currently the nature of Disability Employment Services (DES) varies widely across the state. Support provided to job seekers with ASD by Disability Employment Service (DES) providers needs to address each individual’s needs and, in order to achieve sustainable employment

outcomes, needs to be provided by highly skilled professionals. To improve DES outcomes, these services need to consult with and/or employ professionals such as occupational therapists who have an understanding of the appropriate employment solutions and supports required for people with ASD.

Recommendations:

Disability Employment Services, in order to provide appropriate services to a range of people with ASD who have varying needs, must have access to, or employ, staff who have specific skills to work with individuals with ASD, such as occupational therapists. These professionals may either be embedded within or easily accessed by the Disability Employment Services.
Victorian Government investment in programs to improve awareness and promote support for people with ASD to participate productively in the Victorian workforce, taking a similar approach to that already underway for mental health awareness. Eligibility criteria for funding for disability services and programs needs to encompass the range of needs that the population of Victorians with ASD present with.

Government-funded employment programs should be directed towards:

population level, public awareness programs aimed at creating a culture of appreciation for the unique skill set that people with ASD can contribute if working in an appropriate work environment, with appropriate supports in place;
direct employer education programs where employers can consider their own workplace, and determine supports that can accommodate a person’s needs if they have ASD and also appropriate skills to undertake a position within their organisation. Workplaces can build upon the principles of existing, but little known, resources such as the Australian Government’s “Job Access” website. This website informs employers with general information about the nature of ASD and offers advice about ways to support employees with ASD within workplaces;
individual person/workplace ‘fit’ targeted programs which provide a professional lens on the unique workplace and the unique needs of an individual with ASD as they work in a particular work environment. These programs can also assist an employer to apply this knowledge to their workplace, and enable a customised plan, provided by professionals such as occupational therapists, for employment to occur.
incentive programs including government financial support for workplaces to make the necessary investment in the unique engagement, orientation and support programs, which can enable employers to consider the needs of a person with ASD as they undertake their usual recruitment programs.
group support programs targeted for individuals with ASD to enable them to continue to improve their social skills as they relate to a work environment. Group programs, facilitated by professionals, can both assist the individual with ASD to adapt and participate in the workforce, and prepare the workforce to consider the needs and understand the characteristics that can make work a challenging environment for many individuals with ASD.

Problem #3: SERVICE COORDINATION

Currently, there is poor coordination and integration of Commonwealth and state funding arrangements and services for individuals with ASD. This has resulted in service gaps, inequity, inconsistency and fragmentation of services. People with ASD and their families are required to self-advocate and navigate their pathway to funding and services with little support or guidance, resulting in a lottery of opportunities.

The current structure of service provision causes confusion and anxiety for people with ASD and their families. There is a matrix of funding support options for people with ASD in Victoria, with differing eligibility criteria. These are mostly directed at pre-school and school- aged children, and there are considerably fewer options available for teenagers and adults.

Because of the complexity of current funding arrangements, people with ASD are often required to submit several applications for funding because different supports are covered by different programs. Application processes can be very difficult for people with ASD to navigate without appropriate support, particularly if they are from a CALD background or have a low socioeconomic status. In many cases, people with ASD will have difficulty communicating and try to avoid the stress of navigating funding arrangements on their own. The amount of funding that children with ASD receive will often depend on the ability of their parents to advocate on their behalf.

People with ASD require integrated access to services, rather than having to apply for and access several pockets/agencies for funding. They should have access to a service coordinator or NDIS planner who can assist with goal setting, and planning and coordinating appropriate services.

The National Disability Insurance Scheme (NDIS), though intended to lead to better coordination of services for people with disabilities, has arguably generated more confusion for people with ASD and their families because of the lack of clarity around what supports will be funded.

OTA believes that the current service provision structure, which separates educational and functional goals, is fragmented and lacks a person-focus. For those eligible for disability (through the NDIS) and education support funding (through the Program for Students with Disabilities), the system requires different allied health professionals to work with children at school and at home. This creates potential overlap and barriers to best practice therapy, which considers the person from a holistic perspective. There are a number of recent State Government reviews which have identified the need to address this lack of consistency. OTA is supportive of elements of Recommendation 56 of the Government Schools Funding Review, which states the following:

… To better target student need, eligibility for this funding should shift from the current diagnostic categories within the PSD towards a student’s functional educational needs. Alignment with NDIS eligibility should be considered, noting that how the NDIS will be implemented is still evolving.

Currently, the eligibility criteria for the Program for Students with Disabilities are too rigid, particularly for the Autism Spectrum Disorder category. By shifting eligibility towards a student’s functional educational needs, the Department of Education and Training will be able to ensure that children whose symptoms may not be as evident will still be able to access the support they need.

The Government’s response to the final report from the review of the Program for Students with Disabilities is promising. However, OTA remains concerned that the State Government is yet to accept the recommendation to develop a formal relationship with the NDIA that would ensure maximum alignment with the NDIS as it evolves. These issues will only be resolved if there is ongoing dialogue between the DET and the NDIA, and this needs to happen before full roll out of the scheme commences.

Recommendations:

Both State Government and NDIS funding needs to be allocated according to functional and educational needs rather than age or a specific diagnostic category in order for a person with ASD to have access to the therapy and supports they require.
The Victorian Government should provide funding for cross-sector case management, to assist people with ASD to navigate services, apply for funding and set goals.
As per the PSD review’s recommendation, the Victorian Government should establish a formal relationship with the NDIA to address the lack of clarity around how the NDIS will intersect with education, and to simplify navigation pathways for people with ASD.

LESSONS FOR VICTORIA: NDIS TRIAL IN SOUTH AUSTRALIA

The NDIS began in South Australia on 1 July 2013 for children aged 13 years and under. Both the federal and state governments have underestimated the number of children who would be eligible for support by about 50 per cent.

The increasing prevalence of ASD has caused the trial to double in size, leading to massive cost blowouts and lengthy delays for participants. It was originally estimated that around 5000 children would be eligible for the scheme; however it has since been revealed that the figure is instead closer to 10,000. Nearly half of these children (46 per cent) have been diagnosed with an autism spectrum disorder.

Other trial sites are experiencing similar rates of ASD diagnoses that are likely to become more pronounced once the scheme rolls out in full. People with ASD make up between 24 and 33 per cent of eligible participants, depending on the trial site.

Cost blowouts in South Australia have created uncertainty for children and their families, and raised questions about whether people with disabilities will continue to receive the support

they need regardless of the cost. The NDIS Early Childhood Early Intervention Approach recommends 20 hours of early intervention treatment per week for children with ASD, with a review to be held after 12 months. However, families in South Australia have reported that their children are receiving only a few hours of behavioural therapy through the NDIS each week, with parents relying on their own savings to pay for vital treatment.

It has also been reported that the NDIA is struggling to clarify what constitutes reasonable and necessary supports for children with ASD. This is because the condition ranges from mild to severe and presents itself in different ways depending on the individual. It is therefore possible that the early intervention packages for children with ASD, which are capped at three levels of support, will not adequately meet the needs of children at the most severe end of the spectrum.

Occupational therapists who are currently working in the NDIS in South Australia have reported that there is a lack of clarity around how the NDIS will intersect with education, which is an issue all across the country. Therapeutic interventions and goals that are considered too education-focused (such as handwriting) are not being funded through the NDIS, as they are considered ‘school skills’ rather than ‘life skills’.

An expert panel convened last year by the NDIA to provide advice on what constitutes best practice for ASD intervention therapies highlighted the importance of being clear about eligibility guidelines. OTA welcomes the release of the national early intervention strategy; however this should have been developed earlier to ensure that clear guidelines for funding arrangements for those with ASD were in place.

OTA believes that Victoria can learn a great deal from the trial of the NDIS in South Australia. It is likely that many of the issues experienced in South Australia will be replicated in Victoria unless steps are taken to ensure more accurate estimates of participant numbers, and more effective communication between the federal and state governments.

Recommendation:

The Victorian Government needs to undertake its own modelling of NDIS participant numbers to ensure that the scheme remains cost-effective and sustainable.

Problem #4: ACCESS TO HEALTH AND ASSESSMENT SERVICES

People with ASD experience challenges accessing general health services, including routine health procedures. The health system is often the initial contact point for referral pathways to assessment and therapy service providers for people with ASD. Limited access to health professionals with a good understanding of ASD is therefore also problematic.

People with ASD can experience difficulty accessing assessment and treatment services due to a lack of primary care understanding of the indicators for referral for formal assessment. This can have significant impact on the individual’s overall access to ongoing services and supports. For example, in the current system, when individuals are not diagnosed with ASD prior to school age they are likely to miss out on being eligible for assessment and treatment

services under the current criteria for the range of relatively well funded early intervention services which drops off severely after the age of seven for children with ASD.

Increased awareness amongst GPs of indicators for referral for assessment, and the role of allied health professionals such as occupational therapists and speech pathologists in both the assessment and treatment of ASD, can assist the individual and their family to access services and supports at the earliest possible instance.

Funding needs to be provided to GPs and allied health practitioners for functionally-based rather than diagnostic assessment and therapy services. Assessment services need to be provided by coordinated multidisciplinary teams to alleviate the family burden of multiple visits to a variety of professionals in different locations.

Funding needs continue to prioritise pre-school aged children to respond appropriately to evidence of efficacy of early intervention for this population, but should still be available to people of all ages. Recognition needs to be paid to the value of supports that can be provided to the late-diagnosed population to enable them to improve their productivity and to impact positively on their mental health needs.

When seeking general medical treatment, people with ASD face additional challenges to the general population who are accessing the same health services, as the behaviours and needs of many people who have ASD are generally poorly understood in the health sector. Related to this, the capacity to work with people with communication difficulties is generally poor in health services. The impact is that, for people who have ASD, activities like immunization, minor dental work, and medical procedures can take multiple visits to accomplish. People with ASD often experience difficulty accessing health professionals who are able or willing to manage situations where they may have challenging behaviours during medical treatment. Many local primary health services refer to major hospitals if they cannot manage the individual. This adds significantly and unnecessarily to public sector wait list times for services. Poor understanding of ASD within health services may also lead to less than optimal treatment and outcomes for people with ASD.

Professionals, such as occupational therapists, who work with people with ASD can assist to anticipate problem situations for these individuals which may arise as they interact with the health care system, in the same way that they consider appropriate behaviour regulation and other strategies for individuals with ASD who are coping with a variety of other life situations. Unfortunately, currently systems within public and private health services are not in place to enable this support to occur.

A population-based training package which acknowledges the rights of people with ASD to access health services and suggests strategies to address the needs of this population is required for health and mental health professionals. This training can be provided by professionals such as occupational therapists who are skilled at recommending strategies for individuals to manage challenging situations which occur in many different domains of life.

Recommendations:

Establishment of clear, accessible and well communicated referral pathways for GPs, applied with no age limitation requirement. This will enable earliest-possible

access to services for people with ASD. Referral pathways need to include multidisciplinary assessments to contribute to functional—focused information which include needs assessments to indicate the funding and service recommendations each individual with ASD.

Training is required for staff at mainstream health and mental health services, such as GP and Child and Adolescent Mental Health Services (CAHMS) to manage the behavioural presentations of individuals with ASD as they address the health needs of this population.

CONCLUSION:

SUMMARY RECOMMENDATIONS:

Funding for effective cross-sector case management arrangements to coordinate services for people with ASD.
Establishment of clear referral pathways for GPs to improve access to services for people with ASD.
DES engage and utilise ASD specialist staff (such as occupational therapists) in the design and oversight of ASD funding.
Funding for programs to promote and support the employment of people of ASD.
The establishment of a formal relationship between the Victorian Government and the NDIA to ensure effective coordination of services.
The allocation of State Government and NDIS funding according to functional educational, work and psychosocial

Occupational Therapy Australia applauds the Victorian Government’s Family and Community Development Committee for undertaking a wide-ranging inquiry in to services for people with ASD in Victoria in the context of major state and federal reforms.

Thank you for the opportunity to submit to this Inquiry.

redacted

Kim Mestroni

Victoria Division Manager

Occupational Therapy Australia