7.1
While the previous chapter discussed barriers to adequate service provision for autistic people and their families, this chapter describes the particular challenges faced by identified cohorts, including:
autistic women and girls;
families and carers of autistic people; and
disadvantaged and vulnerable cohorts.
Autistic adults
7.2
While not disagreeing with the importance of early diagnosis and intervention for autistic children, many stakeholders raised concerns there was no corresponding focus on support for autistic adults—despite the lifelong nature of the condition. According to multiple stakeholders, the main drop off point occurs at the end of formal schooling, when services for autistic youth are said to 'fall off a cliff'.
7.3
In part, this may be driven by the persistent misconception that autism is a 'childhood condition'. For example, one autistic adult recounted their experience with a receptionist at a service provider who questioned why they would need occupational therapy assessment and assistance for autism as '"it's a childhood illness"'.
7.4
In addition, this perception may also have contributed to the current under-diagnosis of autistic adults—noting that lack of a diagnosis is itself a barrier to service access. However, even when adults are diagnosed, there is still a lack of appropriate services. According to Autism Aspergers Advocacy Australia (A4), 'these services do not yet exist' and there are 'neither plans nor policies to create essential services that autistic adults need'.
7.5
This view was reflected in evidence presented to the committee about a lack of research into, and understanding of, the supports and services required by autistic adults.
7.6
Stakeholders, including the Department of Developmental Disability Neuropsychiatry, University of New South Wales (UNSW 3DN), also highlighted the particular difficulties faced by autistic adults who may not qualify for the National Disability Insurance Scheme (NDIS) but still have significant impairments that mean they struggle with daily life, including maintaining employment and relationships. Without access to independent financial resources these individuals can find it difficult to access necessary supports:
"At present, you can have a well supported autistic life if you are in a great financial place. If you are struggling to make ends meet, affordable wrap around services just don’t exist." – Lisa, 50.
Autistic women and girls
7.7
As with autistic adults, the misconception that autism is both a childhood illness and one that only affects males is persistent. The historic focus on autism as a childhood condition primarily affecting boys also means that much of the research—and consequently, the approach to services and supports—is based on the needs of male autistic children.
7.8
As described in Chapter 2, this has meant that autistic women and girls are likely to be under-diagnosed and, therefore, also underrepresented in existing support services. Autistic females are also often wrongly diagnosed and, in some cases, are even inappropriately medicated. This is consistent with research showing that 'red flags' for females were 'often dismissed by health professionals, leading to later diagnosis'. As one participant described, this can have potentially fatal consequences:
My daughter began seeing a psychiatrist in September 2014 – age 13 (due to extreme social anxiety and withdrawal) and despite him being informed, on many occasions, that we had autism in the family, she was diagnosed with, and treated for, clinical depression only. Over the next few years, she was prescribed many different drugs and attempted to take her life. After 4 years, we took her to another psychiatrist – she was then given an ASD diagnosis.
7.9
Even when diagnosed as autistic, stereotypes about autism can affect the adequacy of the services females receive. For example, the committee heard of a Disability Employment Service Provider refusing to believe a person was autistic because they were female and an adult. Another participant reported having their diagnosis questioned by professionals, or brushed aside, with comments such as 'everyone is a little bit autistic'.
7.10
A number of stakeholders referred to the different way autism presents in females and at least one suggested that different approaches to service delivery may be required. The Cooperative Research Centre for Living with Autism (Autism CRC) noted that while research in this area has been significant over recent years, it appears that this has not yet translated into better service provision.
Autistic mothers
7.11
Some stakeholders made particular reference to the need for better support for autistic mothers, who have particular support needs but report significant discrimination when seeking services for themselves and their children. For example, The Autistic Realm Australia (TARA) described parents being 'criticised for their parenting, and being accused of exacerbating or even causing their children's challenges'. The Coalition of Autistic Women referred to the 'catastrophic' impact of discrimination, with evidence showing that in family court cases, autistic mothers have had their children removed for 'no other reason than their disability'.
Disadvantaged and vulnerable cohorts
7.12
As described in Chapter 3, there is evidence that autistic individuals from disadvantaged and vulnerable cohorts can face worse life outcomes than the broader autistic population. The Commissioner for Children and Young People in Western Australia also noted that these cohorts face additional challenges in relation to accessing adequate services and supports.
7.13
While these groups also face disadvantage in the general population, in this case their difficulties are compounded by the intersection between their autism and other factors such as their socio-economic status, geographical location, and/or cultural, linguistic background.
7.14
This section provides an overview of identified service provision issues for the following cohorts:
people from lower socio-economic backgrounds;
people in regional and remote locations;
people from culturally and linguistically diverse backgrounds;
gender diverse and LGBQTI people; and
people with complex needs.
Socio-economic background
7.15
More than one submitter highlighted the difficulties that autistic people from lower socio-economic backgrounds have in accessing services, particularly diagnostic services, and argued for additional supports to ensure more equitable access to services. For example, Positive Youth Incorporated (Positive Youth) pointed to research that found families from lower socio-economic backgrounds often experience delayed diagnosis as a result of long waiting lists in the public system and the high cost of private diagnosis. According to UNSW 3DN, research also found better access to early intervention services in more affluent neighbourhoods.
7.16
The impact of financial hardship on access to services was also borne out by stakeholder experiences. Speech Pathology Australia (SPA) reported that in one case, after waiting a year for a diagnosis, a single mother took out an advance on her Centrelink payments in order to access a private diagnosis (so that people would understand her son had anxiety and significant sensory difficulties and was not just naughty or violent). In another case, a six-year-old boy attempted suicide at school because 'he felt so stupid and misunderstood' while waiting over three years for a diagnosis.
7.17
Children and Young People with Disability Australia (CYDA) reflected that inadequate access to timely diagnosis also makes it harder to gain entry to the NDIS and/or receive supports that would enable participation in mainstream health and education services.
7.18
As noted by Positive Youth, without diagnosis and intervention, autistic people from lower socio-economic backgrounds may be more at risk of becoming involved with the justice system. A lack of adequate supports may also reduce employment opportunities—itself a risk factor for increased poverty—and limit autistic people's participation in the community. The inability to afford therapies and supports was described by one autistic parent:
You have kids to care for, a household to run on a tiny budget. You are too crucial, too stretched, and too fragile to take the risk of anything going wrong. And you’re not actually suicidal. You’re just suffering the natural, whole wheat, 100% organic, acute on chronic stress of living, unassisted, with autism.
Regional and remote locations
7.19
Stakeholders presented evidence about the difficulty with service provision in regional and remote locations that may encompass large geographic areas with fluctuating populations, limited infrastructure and diverse demographics. Along with thin markets, this has led to a lack of clinicians and service providers in these areas. As stated by the Government of Western Australia, this places more reliance on government services, which in regional and remote areas may be dependent on visits by city-based clinicians.
7.20
As discussed in the previous chapter, there are noted service shortages and long wait times for those in regional and remote areas, as well as the complete absence of some therapies and supports, such as the NDIS Early Childhood Early Intervention pathway. Mindful argued that specific issue relating to disadvantage in rural areas included fewer skilled staff, less effective utilisation of skilled autism practitioners, limited access to private or public services for ongoing care and treatment, and a lack of access to allied health disciplines.
7.21
The committee heard that the lack of services also resulted in people travelling long distances (often taking time away from work and family) or relocating to access city-based services. As described by one submitter, this can be a heartbreaking decision:
Regional families are often forced to face the decision to leave their lives behind in order to get their children the best care. This is a heartbreaking decision and it's one no family should be forced to make. We need to be supporting our regional communities and not deserting them in times of crisis.
7.22
Accordingly, numerous stakeholders identified a need for better support for people living in regional and remote areas, including investigation of effective ways to build regional capacity, as well as deliver services remotely.
First Nations peoples
7.23
The National Aboriginal Community Controlled Health Organisation (NACCHO) noted that First Nations peoples are both less likely to access services, as well as more likely than other Australians to require support in order to access and participate in disability services.
7.24
The reasons for this include low awareness of autism, a lack of services—particularly in regional and remote areas—as well as a lack of culturally appropriate information, support and services. Other factors that can deter First Nations people from seeking help include poverty, limited access to transport, cultural and language barriers, shame and stigmatisation around disability, a lack of trust in government, and experiences of racism in mainstream services.
7.25
In addition, NACCHO indicated that First Nations peoples are often undiagnosed or misdiagnosed, which has implications for timely and appropriate interventions and treatment. The Ethnic Disability Advisory Centre relayed their experiences in this area:
We have also observed that some Aboriginal clients have not been diagnosed with autism at a younger age so by the time they are in the justice system they are diagnosed with cognitive impairment.
7.26
The Commissioner for Children and Young People Western Australia also advised that Aboriginal children are more likely than non-Aboriginal children to have unmet needs post-diagnosis.
7.27
As with the general population, a lack of services in regional and remote areas can necessitate travel or relocation for diagnosis or therapy. As recognised by the Northern Territory Office of the Public Guardian, this separation from kinship ties, country and culture can adversely affect the health and wellbeing of First Nations peoples.
7.28
While stakeholders identified the need for additional support, this is currently hampered by a lack of research about, and understanding of, how First Nations peoples experience autism, the supports available to them and the impact of culture and language on diagnosis.
7.29
However, the need for more investment in culturally appropriate information and services was recognised in a number of submissions. In line with the preference of First Nations peoples to use Aboriginal and Torres Strait Islander services, NACCHO suggested:
increasing the capacity of Aboriginal Community Controlled Health Organisations (ACCHOs) to provide services;
building relationships between ACCHOs and disability service providers to improve care integration;
commissioning ACCHOs to train mainstream services staff to increase the cultural competence; and
encouraging ACCHOs to register with the NDIS to perform a support coordination role.
7.30
NACCHO also stressed the need to develop integrated models of care. In doing so, it pointed to the work of the Gidgee Healing Aboriginal Corporation in relation to Foetal Alcohol Spectrum Disorder (FASD) as a potential model for autism services (see Box 7.1).
Box 7.1: Gidgee Healing Aboriginal Corporation – FASD program
The program worked with community over 12–18 months to understand what community needed from a FASD program, and how Gidgee Healing, in partnership with Griffith University, could deliver an improved FASD model that is integrated into its holistic model of care.
The strength of the model is that it is driven and managed by community. This shifted the focus from a clinical specialist setting to a holistic primary health care model run by Aboriginal and Torres Strait Islander heath workers and practitioners from that community.
The project demonstrated that there is another way to support children and families affected by FASD which transfers a traditionally clinical approach into a community health approach.
The long-term outcome of this approach is not yet known, however the logical impact of the community driving the response is that the community has greater awareness and understanding of the causes of FASD and the best ways to support children and families impacted by it.
Source: National Aboriginal Community Controlled Health Organisation, Submission 104, [p. 9].
Culturally and linguistically diverse (CALD) communities
7.31
The Autism Advisory and Support Service noted that autistic people from culturally and linguistically diverse (CALD) backgrounds face additional challenges in accessing adequate services, including coordination support. These challenges include language barriers, a lack of local informal support networks, low computer literacy, and a lack of trust in government agencies.
7.32
BioAutism Ltd also suggested that some people from CALD backgrounds may be unfamiliar with autistic presentations, while another stakeholder commented that some cultures associate disability with shame and fear. For example, according to one submitter, an autistic child can be seen as the fault of the mother or even 'as being punished by God'.
7.33
The Ethnic Disability Advocacy Centre suggested that a lack of awareness, as well as language barriers that make it difficult to understand the assessment process, contributes to the late diagnosis of autistic people from CALD backgrounds:
Often, the assessments involve an interpreter. Some parents skip assessment because they do not understand the reason for the rigorousness of the assessment process.
7.34
Accordingly, stakeholders highlighted the need for information about autism to be presented in languages other than English, as well as positive portrayals of autistic people to change perceptions. Submitters also noted a lack of research about how autism impacts CALD communities and suggested this as an area for further investigation.
Gender diversity and sexual orientation
7.35
As described in Chapter 2, there is growing awareness of increased rates of gender variance and non-heterosexual orientation in autistic people compared to the general population. Stakeholders, such as the Australian Psychological Society and the I CAN Network, also reported that this group is more likely to experience mental health issues such as depression and anxiety than heteronormative populations.
7.36
According to the Coalition of Autistic Women, these cohorts also experience abuse and discrimination. The impact in terms of access to appropriate supports was described to Yellow Ladybugs by a young, queer, gender diverse autistic person:
The areas in which I have found this problematic have been when I have been attempting to access and use services essential to me. One of the most notable being that my previous mainstream high school was completely unwilling to make changes for my access needs to the extent that I was heavily bullied for various parts of my existence that challenged the norm as well as my mental health further deteriorated to the point where I could not attend school whatsoever. I was forced to drop out of school.
7.37
Yellow Ladybugs also identified the impact of inadequate mental health services as a concern, driven in part by a lack of expertise in dealing with gender diverse and non-heterosexual autistic individuals. This view was shared by SPA and CYDA, which saw a need to build greater understanding of the needs of these cohorts across relevant workforces.
7.38
As with other vulnerable and disadvantaged groups, there were also calls for more research into gender diverse and non-heterosexual individuals and their experiences of autism.
Complex needs
7.39
While services to support autistic people are generally siloed and poorly coordinated, these issues are often exacerbated for people who have complex care needs that require supports across multiple service sectors.
7.40
The Autism Advisory and Support Service pointed to the difficulties families face in accessing holistic supports as a result of complex care needs that can span multiple government departments. Similarly, Marymead Autism Centre also reported families' desire for 'greater cooperation and liaison between jurisdictions of health, education, housing, mental health, justice and out of home care'.
7.41
Professor Julian Trollor, UNSW, concurred and referred to people with complex needs as 'falling through the cracks between service sectors'. He stated that this 'fundamentally relates back to a lack of cohesive and integrated policy and legislative frameworks and then service system frameworks that don't really speak to one another or historically haven't'.
7.42
In addition to raising concerns about the lack of a coordinated model of care for this cohort, Irabina Autism Services (Irabina) was also critical of the tendency for state-based agencies to spend time and resources 'disputing the mandates and remits of each particular agency' rather than collaborating to meet the needs of autistic people and their families.
7.43
According to Irabina, the lack of support coordination services put families 'in the position of having to identify, evaluate, and approach the multiple services required by individuals', as well as holding agencies accountable if they fail to provide the necessary support. Irabina described the impact on families:
These gaps in the system create a situation in which those who are most vulnerable are further victimised, discriminated against, or traumatised by interacting with a system that is incapable of providing a unified approach to treatment, care, and support.
7.44
Concerns were also raised about the lack of services that are both willing and able to support individuals with complex needs. For example, Irabina explained that generalist services are 'unequipped, untrained, and often unwilling to support clients with complex behavioural presentations,' particularly when there is no financial incentive for doing so.
7.45
The lack of services is also reflected in a shortage of crisis supports for individuals and families with complex needs. Aspergers Victoria described the impact of this shortage on families struggling to manage their child's 'escalating violent and aggressive behaviours':
For those who call an ambulance, they are given a sedative and by the time they reach the hospital, they are calmer and are told to go home. For those with no informal supports they are faced with nowhere to turn and an on‑going cycle in and out of hospitals and mental health wards.
7.46
This concern was shared by the Office of the Public Advocate Victoria, which warned that the lack of adequate support for this cohort was leading to prisons becoming proxy institutions for people with cognitive disability and mental illness. The Tasmanian Government expressed similar fears in relation to hospital admissions being used to keep autistic people safe when supports for their exceptionally complex needs have been withdrawn.
7.47
Like other vulnerable groups, there was a call for research to provide insights into the experiences and needs of families with complex needs.
Families and carers of autistic people
7.48
As described in Chapter 4, autism has a significant impact on families and carers. Multiple submissions described experiences of stress and depression, sleep deprivation, social isolation, loss of employment, the inability to buy a home (or having to sell the family home or take on additional debt to afford services), and the impact on relationships and siblings' quality of life.
7.49
This reflects the significant and often intensive role played by families and carers in providing informal supports for autistic family members. More than one stakeholder cited high levels of dependence on informal supports in Australia, including A4, which suggested there was 'an over-reliance on informal supports' for autistic people. The breadth of support was described by Carers NSW which argued that, in addition to direct personal care, support also includes 'navigating and coordinating services, supports and decision making with, or on behalf of, the person they care for,' as well as facilitating their 'social and economic participation'.
7.50
In addition to the impact on the broader family, a lack of support for parents and carers was also identified as impacting on the quality of supports for autistic individuals. For example, Exercise and Sports Science Australia reported that parents and carers who are 'already at capacity in their caring role' can find it difficult to make time for home therapy sessions. This, in turn, can result in their child not achieving outcomes that would otherwise be possible.
7.51
Stakeholders also reminded the committee that inadequate supports for families also affects autistic parents and carers. One autistic submitter described the challenges of trying to access support for their autistic children:
All organisations, policies and people I interface with about these issues operate under the default assumption that there is a competent adult in charge. But there’s only me. Trying to cope is progressively damaging me, making it harder to cope, and coping more damaging. I’m terrified that I will burn out entirely and not recover.
7.52
In response, there was a broad view that more needed to be done to support the families and carers of autistic people. More specifically, stakeholders raised the need for action to address service gaps in relation to:
family-centred services and wraparound supports; and
better support for families and carers under the NDIS.
Respite care
7.53
Stakeholders highlighted the importance of respite care for the wellbeing of families and carers, as well as the individuals in their care. More than one submitter also emphasised that well-supported parents and carers equated to better supported children and more functional families.
7.54
The need for respite care is particularly important for the families of people with high care needs. For example, one submitter stated that the 'intertwining' of the autistic individual's wellbeing with that of the carer increases in line with the degree of support needed by the individual. As noted by another stakeholder, without support, the risk of carer burnout is high:
Having an autistic child, or children if there is more than one diagnosed child in the family, is more than a 24/7 job. Autistic children require such a high level of care, that parent/carer burnout is inevitable in most cases. Once the parent/carer is burnt out that greatly impedes the quality of care and attention the autistic child is able to receive.
7.55
However, according to Autism Queensland, the introduction of the NDIS resulted in the defunding and closure of 'many important supports for families such as respite, sibling programs and parent programs'.
7.56
As a result, stakeholders such as Mansfield Autism Statewide Services (MASS) called for greater 'availability and quality of planned respite care' to help prevent carer fatigue that can lead to family breakdown and relinquishment'.
7.57
Flexibility in respite care was also important, with one participant suggesting that respite could include options for either the parents or child to have time away from the home, depending on the circumstances:
Respite needs to be flexible, particularly when we are dealing with autistic adults who may be 'high functioning' enough to look after themselves for a night or two with appropriate supports. It cannot just be about sending the autistic person out of their familiar setting, into an unfamiliar one. Respite can also look like this: the parent/s or carer/s having some time away.
Family-centred services and wraparound supports
7.58
A family-centred approach to services involves working in partnership with families to understand their situation and determine what strategies will best meet their needs. It is based on a number of principles, including that:
support works best when it is based on an understanding of a family's goals, expectations, values and everyday life;
parents know their children and their family best;
families learn and grow best when using their strengths;
children's wellbeing and development depends on the wellbeing of all other family members and of the family as a whole; and
family wellbeing depends on the quality of informal social supports and the availability of formal support services.
7.59
According to Positive Youth, a wraparound approach to supports generally involves collaboration between people from different service sectors to meet a person's needs.
7.60
A number of stakeholders cited the importance of both family-centred and wraparound supports for families. For example, Marymead Autism Centre argued that a focus 'on the entire family dynamic is necessary to address the complexities of the family and everyday life challenges,' which may include multiple children or parents with disability or health challenges, isolation and/or unemployment. This view was shared by one parent who noted the link between a family-centred approach and outcomes for their autistic child:
I ask that the committee consider the family as a whole when making policy decisions regarding funding, respite and support workers, not just the needs of the child. If the parents and family unit are functioning well, they are better equipped to make better choices for their autistic child.
7.61
However, the committee heard that services combining family-centred approaches with integrated wraparound services are rare. One provider—MASS—stated that it may be the only provider in Australia offering this unique approach to service delivery (see Box 7.2). As a result, MASS revealed it was 'often in the heartbreaking position of advising parents that we are at capacity, with all of our programs being full for the next 12 months'.
Box 7.2: Mansfield Autism Statewide Services
Mansfield Autism Statewide Services provides a range of integrated wraparound services that aim to keep families together by working with the whole family, not just the child. Its services include:
day and term therapeutic residence schools;
respite, crisis and full-time care;
in-home practitioners (Mansfield Autism Practitioners – MAPs);
entry to school and work transition programs;
professional development for teachers;
allied health industry placements; and
bespoke disability housing.
The MASS approach was acknowledged in the Victorian Parliamentary Inquiry into Services for People with Autism Spectrum Disorder, which recommended that the Victorian Government fund the expansion of the MASS model, including the travelling teacher scheme (now MAPs), across regional Victoria.
The MAPs program offers practical, autism-specific support in the family home, with MAPs living in the family home for 3–5 days at a time, multiple times per year.
A cost benefit analysis of the MAPs service undertaken in 2011 showed a return of $4.83 for every dollar spent.
NDIS support for families and carers
7.62
Many stakeholders raised concerns with the support available for families and carers under the NDIS. This included concerns in relation to respite care, as well as the availability of family-centred and wraparound approaches to supports.
Respite care
7.63
Stakeholders were critical of the support provided for families and carers within the NDIS, particularly in relation to respite care. According to CYDA, families report feeling 'invisible' in the NDIS, with NDIS plans failing to recognise the role they play in supporting their child. Autism Queensland concurred and asserted that neglecting the family context can negatively affect a family's ability to support their child.
7.64
However, in its submission, the National Disability Insurance Agency (NDIA) recognised the importance of sustainable informal support and noted that 'the ongoing capacity of families and carers is critical to the wellbeing of some participants'.
7.65
The government's response to the final report of the Joint Standing Committee on the National Disability Insurance Scheme on its inquiry into NDIS planning also committed to improving support for informal carers:
The NDIA has worked with Carers Australia to develop internal guidance for NDIA planners and Partners in the Community to support improved outcomes for participants, families and carers by ensuring all planning staff understand the valuable role played by caregivers and families.
7.66
That said, the NDIA also emphasised that funded supports are 'not intended to displace the ordinary role of parents, families and carers'.
7.67
The NDIA's application of the 'ordinary parental responsibility' principle was criticised by some stakeholders. For example, CYDA argued that the NDIS has 'little understanding' of the level of support provided by families to meet their child's daily needs. This view was shared by Autism Spectrum Australia which also pointed to a lack of understanding about the support families require to 'maintain their caregiving roles', as well as the 'intensive support' young autistic children need to develop early skills.
7.68
The experience of one family was relayed by CYDA:
Respite was difficult to get as 'parental responsibility' kept getting quoted, even though the single parent was not able to do these parental responsibility [sic] due to physical & mental health issues.
7.69
Another submitter claimed that she had been advised not to expect support 'for circumstances that would be reasonable for all parents'. Given the additional challenges involved in parenting an autistic child, she argued that the NDIA's 'ordinary role of parents' principle minimised the experience of parents and carers:
All parents take their children to activities, supervise and assist in their daily living. Special needs parents are carers, advocates and personal assistants to their child in addition to all other parenting responsibilities. … All parents deal with challenging behaviours such as temper tantrums. Special needs parents manage meltdowns that can last for hours and become violent and place other family members at risk of harm.
7.70
There was also frustration with the NDIA's application of the ordinary role of parenting principle and its use of existing support networks to deny respite care. For example, the committee heard of one family who were denied respite by the NDIA because the family was seen to have a support network—despite this network providing minimal support (as well as being unequipped to do so):
Our son has been in the care of someone other than myself and my husband for a total of three hours in the past two years, and that was because I was rushed to hospital … and my husband was required to be at the hospital and children weren't allowed in.
7.71
In response, more than one submitter suggested the creation of a category of NDIS funding to better support informal care givers.
Family-centred services and wraparound supports
7.72
While the NDIA indicated that its Early Childhood Early Intervention approach places a strong focus on family-centred planning, this was not reflected in feedback about NDIS planning processes more broadly. For example, while Autism Queensland argued that children need 'family-centred plans that identify and support active family engagement in the child's early intervention', it claimed that '[m]any wrap around supports for families are either not funded or not adequately funded under the child's individual funding package'.
7.73
This was also reflected in evidence from the Marymead Autism Centre, which stated that children were considered in isolation from their families 'despite extensive research which shows the development and wellbeing of children and young people is facilitated through supportive home learning and support environments'.
Committee view
7.74
This chapter has focused on stakeholder concerns that, within the broader autistic community, there are certain cohorts that are at even greater risk of missing out on services and supports. In these cases, the committee contends that additional scaffolding and support is required to ensure they receive the services they require.
Disadvantaged and vulnerable cohorts
7.75
The committee notes that gaps in services and inadequate provision are likely to have a disproportionate impact on the following cohorts, given the complexity of their needs and/or the intersection between their autism and other factors:
people from lower socio-economic backgrounds;
people in regional and remote locations;
people from culturally and linguistically diverse backgrounds;
gender diverse and non-heterosexual people; and
people with complex needs.
7.76
Additional challenges also exist for autistic adults, women and girls, as well as the families and carers of autistic individuals. As such, the committee accepts that there will be a need for the National Autism Strategy to focus on meeting the needs of all autistic people—including the most vulnerable and disadvantaged groups. This should include actions to ensure that autism information and services are:
accessible regardless of geographic location; and
tailored to meet the needs of individual cohorts.
7.77
Encouragingly, the committee heard evidence about the potential of remote service delivery and the use of local networks and integrated care models to deliver better services for First Nations people and those in regional and remote locations. However, the committee notes that further investigation of the needs of all vulnerable cohorts—and the most effective ways to meet those needs—will be required to inform specific policy responses, as well as any potential actions under the National Autism Strategy.
7.78
Despite this progress, the committee remains deeply concerned about the adequacy of supports for individuals with complex needs, particularly in times of crisis. While recognising the role earlier and better intervention play in preventing crises, the committee is disturbed by evidence suggesting that prisons and hospitals are being used to fill the gaps in appropriate supports, including providers of last resort. Accordingly, in addition to the recommendations below, further recommendations in relation to the National Disability Insurance Scheme (NDIS) complex needs pathway and provider of last resort arrangements appear in Chapters 14 and 16.
7.79
The committee recommends that the National Autism Strategy include a focus on meeting the needs of all autistic people. This should include a particular focus on the provision of adequate and appropriate services for autistic adults, women and girls, as well as disadvantaged and vulnerable cohorts of autistic people such as:
people from lower socio-economic backgrounds;
people in regional and remote locations;
people from culturally and linguistically diverse backgrounds;
gender diverse and non-heterosexual people; and
people with complex needs.
7.80
The committee recommends that the National Autism Strategy include specific actions to improve access to services in regional and remote areas. This should include options for remote service delivery (such as telehealth), as well as working with relevant medical colleges and professional bodies to increase the supply and retention of clinicians and allied health professionals available to work in regional and remote locations.
7.81
The committee recommends that the National Autism Strategy include specific actions to improve access to services for First Nations peoples. This should include building the capacity of Aboriginal Community Controlled Health Organisations to deliver autism services in First Nations communities, as well as trialling the use of alternative care models, such as those in place to support individuals with Foetal Alcohol Spectrum Disorders.
7.82
In addition, the taskforce established to develop the National Autism Strategy should include First Nations representation.
7.83
The committee recommends that, as a priority, all governments through the National Federation Reform Council review their approaches to coordinating service delivery for autistic people with complex needs and implement actions to ensure integrated and appropriate support for individuals and families with complex support needs, particularly during times of crisis.
Support for families and carers
7.84
The committee is aware that tension exists in the autism community in relation to the role of non-autistic parents and carers as advocates for autistic individuals. However, the critical role of parents and carers cannot be separated from the success of autistic individuals. As the committee heard, parents and carers:
…guide and teach children, they offer encouragement and supports through the transition to adulthood, are their children’s strongest advocates, navigate government supports and the education system and are crucial to an individual’s social support system.
7.85
In addition, the high reliance on informal supports for autistic people means that their families, parents and carers shoulder a significant caring load. Despite the wellbeing of parents and carers being critical to the success of autistic people, the committee heard overwhelming evidence of inadequate support for people in these important caring roles. The impact of inadequate support for families and carers can be debilitating, both financially and emotionally. Accordingly, the need to acknowledge and support informal care arrangements is recognised as a policy priority within Australia's Disability Strategy 2021–2031.
7.86
While the committee also recognises the role of the Carer Gateway in providing advice, services and supports for carers, the evidence provided to the committee suggests that there are still gaps in supports for families and carers in relation to respite care, as well as a lack of services that are family-centred and offer wraparound supports. The committee notes particular concerns in relation to the support available under the NDIS, specifically that there is:
a lack of clarity and consistency in how the principle of not supporting the 'ordinary role of parenting' is applied by the NDIA;
an assumption that the existence of a support network can be sufficient grounds for denying respite care, regardless of the actual support provided by that network; and
a mismatch between the stated aim of providing family-centred planning under the Early Childhood Approach and the lack of family-centred approaches for all clients.
7.87
The committee also welcomes the government’s response to the NDIS planning inquiry regarding internal guidance developed by NDIA with Carers Australia. However, this should be published for transparency and consistency.
7.88
The committee acknowledges that the provision of respite and support services for parents is not solely the preserve of the NDIA but the committee heard evidence that many state-based supports for families and carers have disappeared since the introduction of the NDIS. As such, there is also an urgent need to address deficiencies in state-based services for parents and carers.
7.89
The committee recommends that the National Autism Strategy recognise the vital role that families, parents and carers play in supporting autistic individuals.
7.90
The committee recommends that the National Disability Insurance Agency work with stakeholders and experts to:
clarify the operation of the 'ordinary role of parenting' principle, recognising the significant additional responsibilities borne by parents and carers of autistic individuals; and
institute a family-centred approach to planning that extends beyond the Early Childhood Approach and is supported by training in family-centred approaches for National Disability Insurance Scheme Planners, Local Area Coordinators, and Support Coordinators.
7.91
The committee recommends that the National Disability Insurance Agency publish its guidance for planners regarding the role of caregivers and families to improve transparency and consistency of support provided.
7.92
The committee recommends that state and territory governments undertake a mapping of respite and support services for parents and work with government and non-government providers to address identified gaps in support.