15.1
This chapter describes the experiences of autistic people in relation to housing. This includes discussion of current housing outcomes, the availability of affordable and appropriate housing stock, as well as the difficulties autistic people encounter when trying to access public housing or the private rental market.
Overview
15.2
According to the Australian Institute of Health and Welfare, housing provides the shelter, safety and security that are critical to the health and wellbeing of people with disability. Affordable and appropriate accommodation helps people 'participate in the social, economic and community aspects of everyday life'.
15.3
The range of accommodation options for autistic people reflects the breadth of need across the spectrum. For example, some autistic people live independently in their own home (with or without support), while others live with family, or with friends in a group care arrangement. Other accommodation options include supported living arrangements that can be either shared or independent.
15.4
Accommodation and housing support for autistic people can be accessed privately (including owning or renting), through social housing, or via disability service providers. The cost of accommodation and housing support can be met privately but may also be supported by various government initiatives, such as Commonwealth Rent Assistance, the National Rent Affordability Scheme and the National Disability Insurance Scheme (NDIS) (see Table 15.1 for further details).
Table 15.1: Funding of housing supports for autistic people
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Capacity building to live independently in the community, improve living skills, money and household management, social and communication skills and behavioural management
Home modifications to a participant's own home or private rental property (on a case by case basis in social housing)
Personal care support, such as showering and dressing
Help around the home (such as cleaning and laundry) where a participant's disability prevents them from doing these activities
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Social and community housing
Homelessness and emergency accommodation services
Commonwealth Rent Assistance to help eligible participants with the cost of housing
National Rental Affordability Scheme
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Source: National Disability Insurance Scheme, What housing supports are included, 4 December 2020, www.ndis.gov.au/participants/home-and-living/what-housing-supports-are-included (accessed 14 November 2021).
15.5
While there is a lack of definitive data on housing outcomes for autistic people, Autism Aspergers Advocacy Australia (A4) indicated that, anecdotally, many autistic people in Australia live with their parents until their parents die or can no longer support them.
15.6
This anecdotal evidence aligns with research cited by La Trobe University's Olga Tennison Autism Research Centre (OTARC) which found that 'only 10 per cent of young autistic adults in Australia reported living independently from family'. It is also reflected in the results of a 2017 survey of parents of autistic adolescents and adults by Autism Queensland which found that:
85.5 per cent were living in the family home;
5.8 per cent were in a supported/group home;
5.8 per cent were living independently alone;
2.9 per cent were living independently with housemates; and
1.4 per cent living independently with a partner.
15.7
By comparison, the Household, Income and Labour Dynamics in Australia Survey showed that only 56.4 per cent of men and 53.9 per cent of women in the general population (aged 18–29 years) lived with their parents in 2017.
15.8
In terms of home ownership and housing tenure, an Australian Autism Alliance (Autism Alliance) survey of autistic adults and parents/carers of autistic adults revealed that:
19.7 per cent of autistic adults owned a home; and
18.6 per cent of autistic adults were renting a home.
15.9
This compares to home ownership and home rental rates of 67 per cent and 32 per cent respectively across the general population.
15.10
Evidence presented to the committee suggests that the high proportion of autistic people who remain in the family home reflects:
the degree of support needed for some autistic people to live out of home;
a lack of appropriate and affordable housing stock; and
difficulties accessing public housing and the private rental market.
Support required to live independently
15.11
The committee heard that many autistic people need support to live independently. The type of support required can range from assistance with personal care, such as showering, eating and dressing, to assistance with home management, budgeting and paying bills.
15.12
Perhaps reflecting the high reliance on informal care arrangements for autistic people, the Autism Queensland survey found that 79 per cent of those living independently relied on regular support from their parents. The primary types of required living support were household support (19 per cent), budgeting/financial support (18 per cent), organisational support (12 per cent), general activities of daily living (9.46 per cent), specialist support (8 per cent), and social support (8 per cent). Other identified support needs included mental health support, emotional support, medical support and study support, as well as help with transportation, grooming and hygiene.
15.13
For those living out of home, the need for assistance also extends to the search for appropriate accommodation that is affordable, accessible and safe while allowing choice and independence.
15.14
The committee heard that the high proportion of autistic people living at home—and the level of care and support that may be required—places significant pressure on families and carers. One parent described his worries in relation to both his autistic son and his non-autistic daughter who will take on the primary caring role once he dies:
…my son lives in a self-contained bungalow in our backyard. Although he is independent in many ways, he is dependent on me for daily support—emotional, economic/financial management, coordinating activities and provision of meals. When I die I expect his support to be taken over by his younger sister … His sister will also have the responsibility for our other son (with Down syndrome) and her own children. I worry for her ability to sustain this heavy burden, although she appears to accept the responsibility.
15.15
Parents also raised concerns that the NDIS is not supporting long-term strategies that would allow autistic participants to transition to independent living prior to the death of their parents or carers. For example, Mrs Roslyn Ward told the committee that her son's previously tailored plan—designed to transition her son to supported independent living—had been replaced by a 'cookie cutter plan' along with cuts in their son's funding supports. This new plan excluded necessary elements of support and disregarded the need for the transition process.
15.16
The impact of ageing parents also creates significant anxieties for autistic people themselves, particularly in the absence of other supports. As one autistic woman explained:
The reality is that at 46 years old I’m single, childless and I have less than $5 000 in the bank. I don’t own property, I have exactly 400 Telstra Shares, I share a car with my mum and if you sold every possession I own I might get $2 000. I live in the top half of my parent’s home so if they have to sell the house I become homeless. As I age the risk factor that I will become even less finically secure and homeless goes up. My parents are ageing and with their increasing health issues I don’t know how long they have to live, my sisters live overseas and I do not have close friends or family to turn for support.
Availability of affordable and appropriate housing stock
15.17
The committee heard that a lack of affordable and appropriate housing stock contributes to poor housing outcomes for autistic people.
Affordable housing
15.18
Broadly, housing affordability in Australia has declined since the early 1980s, with low-income households in the private rental market most affected by high housing costs.
15.19
Given the poor health, education and employment experiences of many autistic people, they may be more likely than the general population to experience housing stress, insecure housing and homelessness. The link between employment and the ability to afford housing was seen as particularly critical. For example, Mr Cameron Boyd noted that:
To be able to afford housing typically you need to be in employment, and as people on the autism spectrum experience significant barriers to employment …, there is a subsequent flow on effect and these barriers also exist to finding suitable housing.
15.20
While more affordable public housing is available and prioritised for people with the greatest need (such as those experiencing homelessness) and people with a special need for assistance (such as those with disability), access can be challenging. The difficulties autistic people experience in accessing public housing are discussed later in this chapter.
Appropriate housing
15.21
The committee heard that the appropriateness of housing relates both to its physical design, as well as its style—that is whether it is individual or shared.
Physical design of accommodation
15.22
For many autistic people, the built environment, including housing, can create sensory overload, stress and anxiety which impact on their safety and wellbeing.
15.23
According to Amaze, housing design that caters for autistic characteristics can help to 'reduce anxiety and increase independence and social participation of autistic people'. They noted that common barriers to appropriate housing for autistic people include 'lighting, acoustics, smells, colours, spatial features and flow, flooring and other design elements'.
15.24
This view was shared by one autistic mother who identified temperature, lighting and acoustics as potential sources of stress for autistic people. She also noted that sensory issues might mean that some autistic people require a bath rather than a shower or may need sufficient space in which to move in order to meet their sensory needs. In addition, motor dyspraxia in some autistic people could result in stairs or uneven surfaces in a home becoming a safety issue.
15.25
The same submitter also described the additional challenge involved in finding appropriate housing for autistic children who are unable to assess risk:
This is an area that is hugely neglected and difficult to navigate, because safety is a big issue—whether it be main roads, waterways, open spaces ... Multi story homes, balconies and windows all become jump/fall risks. When looking at accommodation options, it is very difficult to find options that are safe primarily for my son, before I can even entertain affordability, or choice of comfort and preferences.
15.26
While noting that the needs of autistic people can vary significantly, Amaze identified the following measures which could improve the accessibility of housing for autistic people:
involving potential occupants (and/or family/carers) in the design process as early as possible;
sound proofing, limiting external noise to a prescribed level indoors;
neutral flooring and colouring; and
lighting prescriptions, including no fluorescent lighting and mandatory dimmer switches.
15.27
To this end, another submitter suggested looking at the work of Shelly Dival from Enabling Spaces, who is 'leading the way in educating builders and organisations' about housing design that meets the needs of autistic people.
Style of accommodation
15.28
As described previously, accommodation options for autistic people include both shared and individual housing. While there was some support for shared accommodation as a means of preventing social exclusion and homelessness, other submitters pointed out that social difficulties prevented some autistic people from living in shared housing arrangements. For example, the Ethnic Disability Advocacy Centre observed that some of its autistic clients do not understand 'the nature and requirements of sharing accommodation with other people'. This view was supported by another submitter who described the potential consequences of forcing an autistic person to live in unsuitable accommodation:
Even for 'high functioning' autistic individuals such as my son, sharing a living space with someone else can be too much, and leads to meltdowns, panic attacks and trauma. Their behaviour can in some instances become verbally abusive and sometimes physically threatening towards others as a result of the trauma and confusion that shared accommodation expectations create. Living with other people is simply not an option, unless managed with medication that may not be necessary were they allowed to live on their own.
15.29
Spectrum Labor also raised the potential for abuse in shared supported accommodation settings. This was reflected in evidence from the Office of the Public Advocate Victoria (OPA Victoria) that an 'unsuitable' client mix—resulting from a combination of complex support needs and a one-size-fits-all approach—can lead to shared homes becoming violent places. In these cases, the OPA Victoria noted that it is the client who 'bears the brunt and the costs of an inadequate solution to the problem of a lack of appropriate housing'. Accordingly, it argued that:
More innovative solutions are required for people with have complex support needs that look to a range of housing options apart from the sole option of 24/7 shared supported accommodation with five residents who did not choose to live together.
15.30
This proposition was also supported by the Ethnic Disability Advocacy Centre which called for 'appropriate individual housing' to be made available for autistic people.
Availability of appropriate housing
15.31
Multiple stakeholders noted an insufficient supply of appropriate housing options for autistic people. For example, the Ethnic Disability Advocacy Centre described a shortage of individual housing and a 'long wait for accessible, safe housing'. This view was also shared by the mother of an autistic individual who submitted that:
The lack of public housing, and the long waiting list is discriminatory towards adults who must live on their own. In turn, this means that many families need to keep their autistic loved one at home with them for the long term, to care for them, as the parents/carers themselves move into their twilight years.
15.32
In addition, the Northern Territory Office of the Public Guardian observed that the lack of housing stock took away the ability to offer 'real choice and control' to autistic people.
15.33
The Queensland Law Society suggested that a lack of appropriate housing may be a specific challenge for elderly autistic people who may struggle to find retirement accommodation options able to support their needs. Accordingly, it suggested consultation to address the current shortfalls in appropriate housing for autistic people.
15.34
The committee also heard that there were particular issues in relation to the availability of NDIS Specialist Disability Accommodation for autistic people with complex support needs. These are discussed in more detail below.
NDIS Specialist Disability Accommodation
15.35
NDIS Specialist Disability Accommodation (SDA) is 'housing designed for people with extreme functional impairment or very high needs'. Participants with autism make up the third largest group of participants with SDA at 11 per cent. Of the four SDA design categories (see Box 15.1), the committee heard that the 'robust' category would be the most likely to be funded for autistic people with complex support needs.
Box 15.1: SDA design categories
1. Improved liveability—housing with better physical access. It also has more features for people with sensory, intellectual or cognitive impairments. For example, you may need walls and floors that are very easy to see, living areas that mean your support workers can see you easily, or very few stairs in your home.
2. Fully accessible—housing with a high level of physical access features for people who have lots of physical challenges. For example, you need to use a manual or powered wheelchair at home, or can’t use steps.
3. Robust—housing that is very strong and durable, reducing the need for repairs and maintenance. The way it is built should make it safe for you and others. This type of design category may suit people who need help managing complex and challenging behaviours. We think about how often you currently cause property damage, and the extent of the damage.
4. High physical support—housing that includes a high level of physical access for people who need very high levels of support. For example, you may need a ceiling hoist, backup power supply, or home automation and communication technology.
15.36
Both St Vincent's Health Australia (St Vincent's) and the Tasmanian Government pointed to a shortage of 'robust' NDIS SDA for people whose support needs 'cannot be met by family or within "standard" service options'. This view was shared by the Queensland Government which reported that shortages of SDA have resulted in some NDIS participants being unable to use the funding allocated in their plans. This appears to be reflected in the most recent NDIS report on SDA which shows that the supply of robust category housing is lower than the other three design categories (see Figure 15.1).
15.37
Stakeholders also commented on the inappropriate use of hospitals or hotels to house autistic people with complex needs who cannot be accommodated elsewhere. For example, the Tasmanian Government noted 'episodes of hospital admissions and extended stays in hospital' due to the lack of alternative options for people with complex needs.
15.38
Similarly, St Vincent's submitted that there is 'a small but significant number' of autistic people who are unable to remain in their accommodation because of their behaviours or complex needs. St Vincent's explained that these people can be placed in mental health units or medical wards 'for lengthy periods' and cared for by clinicians with 'little or no understanding' of autism. In some instances, they are housed in hotel rooms with NDIS-funded carers, 'usually at a 2:1 ratio, 24 hours a day, 7 days a week. In many instances these carers have limited training, supervision or support in either [autism] or mental health'.
15.39
The OPA Victoria suggested that disputes about who is responsible for housing people with complex needs exacerbate poor outcomes for outcomes for individuals. It cited the case of an autistic man with mental health issues who spent seven weeks in a mental health unit after being assaulted by a resident of his group home. While it was eventually agreed that the man should move out of the group home, neither the National Disability Insurance Agency (NDIA) nor the Victorian Department of Health and Human Services (DHHS) accepted responsibility for his rehousing:
Eventually, it was accepted that he should move, however, the NDIA said that it could not fund housing. Meanwhile, DHHS said that, in an NDIS environment, it was not its responsibility to rehouse the co-resident. To facilitate his discharge from hospital, NDIS funding was utilised for temporary accommodation for the assault victim, however, this reduced the amount available to him for other purposes.
15.40
This reflected evidence from other stakeholders suggesting that more work is needed to clarify the interface between NDIS-funded accommodation and mainstream services. For example, the Government of Western Australia (WA Government) indicated that the state's role in implementing SDA was 'yet to be determined'. The Queensland Government stated that although states are responsible for housing, 'the NDIA is responsible for stimulating the supply' of SDA housing.
15.41
However, the Tasmanian Government argued that state governments must also play a role in providing robust SDA accommodation given 'service development for this very specific accommodation response is not typically attractive to property developers or service providers'. This view was supported by one submitter who contended that SDA providers were focused instead on the high physical support category which 'receive higher returns'.
15.42
Market failure in relation to robust SDA housing was also highlighted by a parent who spent two years trying to find an SDA provider for their son:
We have been fortunate to find (eventually) an SDA provider who is going to build a home for my son and another NDIS participant, but this has been after a solid two–three years of contacting over 50 disability organisations, many of whom said that building robust was a problem and that they would not be providing this sort of housing (once again picking and choosing which disability to help—and it’s not people with autism).
15.43
In response, the Tasmanian Government observed that its Affordable Housing Strategy 2015–25 includes:
…funded commitments to construct new homes that are purpose built for those participants of the NDIS with complex and exceptional needs who require a tailored form of integrated housing and support. This includes NDIS participants with SDA approved in their plan or who have NDIS Supported Independent Living packages for supported accommodation.
15.44
The Affordable Housing Strategy 2015–25 will also include a 'portfolio plan for SDA' which will focus on the future management of SDA.
15.45
Similarly, the WA Government indicated that it is working with the NDIA on 'a joint agreement that will prioritise NDIS participants in urgent critical need of an SDA assessment'. According to the WA Government, this is expected to play a key role in stimulating the supply of SDA housing for NDIS participants.
Accessing to social housing and the private rental market
15.46
As described earlier, an Autism Alliance survey of autistic adults and parents/carers of autistic adults indicated that 18.6 per cent of autistic adults were renting a home.
15.47
While there is a lack of data on the split between social housing and private rentals for autistic people, the Australian Institute of Health and Welfare (AIHW) found that people with disability are more likely to live in social housing than rent in the private market (see Table 15.2).
Table 15.2: The most common types of landlords for people with disability
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Real estate agent
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42.0
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63.0
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State or territory housing authority
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16.0
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4.1
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Parent or relative in same dwelling
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12.0
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8.1
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Other person not in same dwelling
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12
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12
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15.48
In addition, the AIHW found that those with severe or profound disability are less likely to rent in the private market (36 per cent) and are more likely to rent from a state or territory housing authority (17 per cent) or have a parent or relative in the same dwelling as their landlord (19 per cent).
15.49
Regardless of whether autistic people accessed social housing or the private market, the committee heard that autistic people faced significant challenges in accessing suitable housing.
Social housing
15.50
The committee heard that autistic people face long wait times to access social housing, with two submitters reporting wait times of 10 and 17 years respectively.
15.51
While there does not appear to be any autism-specific data for social housing, wait times can be affected by both the location and type of housing required. For special needs households in 2019–20, the AIHW reported that around:
23 per cent (2 400 households) waited for less than 3 months;
29 per cent (3 000 households) waited between 3 months and less than 1 year;
38 per cent (3 900 households) waited between 1 year to less than 5 years; and
10 per cent (1 000) households waited for more than 5 years.
15.52
Once in social housing, autistic people reported that their experiences were impacted by a lack of understanding of autism. For example, one autistic woman described being 'bullied, intimidated, stood over and traumatised' by public housing authorities as a result of being disorganised and untidy—a symptom of her executive functioning difficulties caused by autism. Similarly, she also reported being wrongly depicted as a hoarder because she has 'a lot of stuff' that relate to her interests.
15.53
A lack of systemic understanding of autism also means that autistic people are reliant on the knowledge of individual housing authority offices or staff members. For example, Mr Phillip Gluyas explained that he ended up moving to a different office in part because the manager at the first office 'was distinctly averse to autistic needs'. Another submitter described the management of their property as changing from 'benevolent' to 'brutal' after they were assigned to a different office.
The private rental market
15.54
The private rental market is generally more competitive and less affordable than social housing. However, the primary issues identified by stakeholders in relation to the private market were discrimination and a lack of understanding of autism by real estate agents and landlords.
15.55
For example, the committee heard one account of an autistic individual being evicted from private housing because they were perceived as 'strange' by their landlord. Another individual reported being turned away from properties despite having a 'flawless rental history', outstanding references and not having made 'a single late payment in 20 years of renting'.
15.56
The committee also heard that process of securing rental accommodation can become a vicious circle. For example, failing to secure accommodation can increase stress and anxiety to a point where it affects their presentation and makes it harder to secure accommodation. Yellow Ladybugs described the experience of an autistic person who was required to move house five times in nine months:
Being at the mercy of property manager after property manager, having them decide my fate, whether I was worthy enough to get a roof over my head or not; me excruciatingly aware of how mentally ill I appeared to others as I could no longer hide it, knowing this would affect my presentation and ability to gain rental housing. And it did.
15.57
When a person chooses to disclose their autism, a lack of understanding can also lead to misinterpretations and negative outcomes. For example, Yellow Ladybugs relayed the experience of one autistic individual who informed a property manager that they 'really needed' a specific property because it suited their needs:
I was treated with what I can only describe as 'disgust at my entitlement'. They assumed I felt entitled to priority over other applicants because I disclosed my disability and they said as much to me.
15.58
Accordingly, submitters called for better education and training in relation to the needs of autistic people.
15.59
In addition, given there will always be a need for people with disability to rent in the private market, there was also a desire for private rentals to become more disability friendly and for landlords to be more accepting of 'reasonable requests' from autistic tenants.
Committee view
15.60
The committee recognises the importance of secure, appropriate and affordable housing to the life outcomes of autistic Australians. The committee also notes that affordable and accessible housing—as well as choice and control over where people live and who they live with—are identified as policy priorities in Australia's Disability Strategy 2021–2031.
15.61
Over the course of the inquiry, the committee heard that insecure housing contributes to poorer outcomes across health, education and employment domains. It is also a predictor of ongoing engagement with the justice system and has been cited as a factor in the heartbreaking decisions families have made to place their children in state care.
15.62
The housing statistics for autistic people and their families are troubling, with only 10 per cent of young autistic adults living independently from their parents. While the committee recognises the important role informal care plays in supporting many autistic individuals, it is not clear to the committee that an appropriate balance of formal and informal supports has been achieved. The committee is concerned that an ongoing failure to support independent living will only serve to increase the burden on the health, welfare and public housing systems—particularly as parents and carers age and are no longer able to provide the informal support upon which their children rely.
15.63
The committee also believes the National Disability Insurance Scheme (NDIS) must be more responsive to participants' long-term housing goals. For those participants living at home, this process must not just account for the immediate needs of the participant but must also establish systems and supports that will enable independent living following the death of their parents or carers.
15.64
The committee recommends, as part of the inquiry into the National Disability Insurance Scheme proposed in recommendation 6, that the effectiveness of funded supports to enable autistic people to live independently be reviewed. This should have particular reference to:
the high proportion of autistic adults living in their family home;
the impact (and appropriateness) of the informal care burden on parents and carers; and
the need for long-term accommodation planning to enable independent living following the death of a participant’s parents or carers.
15.65
The committee also acknowledges stakeholder concerns about a lack of housing that accommodates the specific needs of autistic people. This includes housing designed to meet autistic people's sensory needs, as well as the need for more single-person accommodation where an individual's social challenges mean that shared accommodation is not an appropriate housing solution.
15.66
The committee recommends that the National Disability Insurance Agency work with relevant stakeholders to review the Specialist Disability Accommodation Design Standard to ensure it accounts for the sensory issues experienced by autistic participants.
15.67
The committee recommends that the Australian Government work with state and territory governments and relevant stakeholders to develop housing strategies to encourage the construction of social housing that responds to the needs of autistic people in relation to housing design and type.
15.68
For autistic people with complex needs, it is even more difficult to find appropriate accommodation. Disturbingly, in the absence of suitable alternatives, the committee heard that hospitals have become de facto accommodation providers for autistic people with complex presentations.
15.69
This appears to reflect evidence provided to the committee about a shortage of Specialist Disability Accommodation (SDA) in the 'robust' category, as well as broader concerns about the intersection of NDIS-funded and mainstream supports.
15.70
The committee believes that more needs to be done to identify and address market failure in the provision of appropriate housing options for autistic people, particularly in the development of more 'robust' SDA.
15.71
The committee recommends that the National Disability Insurance Agency work with state and territory governments and non-government housing providers to increase the supply of the 'robust' category of Specialist Disability Accommodation.
15.72
The committee recommends the National Disability Insurance Agency work with state and territory governments to clarify the intersection of responsibilities in relation to housing for people with complex support needs.