Journal of Housing and the Built Environment

, Volume 26, Issue 1, pp 1–15

(Un)accommodating disabilities: housing, marginalization and dependency in Australia

Authors

    • Institute for Social ResearchSwinburne University of Technology
Original Paper

DOI: 10.1007/s10901-010-9201-x

Cite this article as:
Saugeres, L. J Hous and the Built Environ (2011) 26: 1. doi:10.1007/s10901-010-9201-x

Abstract

This paper examines the ways in which a lack of adequate housing and welfare provision for people with different kinds and degrees of disabilities reinforces their marginalization and dependency on carers, support agencies and the State. This paper argues that even though most people have to rely on others for help and assistance at some point in their lives, the ways in which dependency and disability are socially constructed reproduce the marginalization of people with disabilities. Drawing on findings from qualitative research with people with disabilities and family carers in urban and regional Victoria, Australia, this article explores how this lack of adequate housing and welfare provision reinforces the dependency of people with disabilities through low incomes, unsuitable housing design and poor housing conditions, restrictions in terms of location and place, and the lack of suitable care and assistance.

Keywords

DisabilityHousingDependency

1 Introduction

Research on housing and disability in Australia has reported a significant shortage of affordable and adequate housing for people with disabilities (Bleasdale 2007; Beer et al. 2006; Bridge et al. 2002). The design and building of private dwellings has largely ignored the requirements of people with physical disabilities both in Australia and other Western countries (Clarke and George 2005; Casas 2007; Bleasdale 2007; Bridge et al. 2002; Harrison 2004; Imrie 2004; Heywood 2005; Imrie and Hall 2001). The process of deinstitutionalization for adults with disabilities, particularly those with intellectual disabilities and mental illnesses, has increased the demand for community care, while existing resources to provide adequate supported housing are insufficient (Bostock and Gleeson 2004; Wiesel and Fincher 2009).

Indeed, in Australia there is no national framework to coordinate flexible delivery of housing and support services for people with different types of disabilities (Bleasdale 2007; Bridge et al. 2002).

In addition, as people with disabilities are often unable to be in paid employment or are only able to do casual or part-time work, which is often low paid, many have to rely solely on welfare benefits such as the Disability Support Pension. As a result, many households with a person with disabilities live in poverty (Beer et al. 2006; Saunders 2005). Private rental housing and home ownership are unaffordable options for many people with disabilities (Bridge et al. 2002). Those with severe physical disabilities who do not have family members they can live with often have to go to nursing homes even when they are younger adults and thus are not in care accommodation specifically suited to their needs (Bridge et al. 2002). People who are able to live without ongoing support have the option of public or community housing, but this provision is also limited and does not always suit the needs of disabled people (Bostock and Gleeson 2004; Bridge et al. 2002).

This article examines the ways in which the lack of affordable and adequate housing for people with different types and degrees of disabilities contributes to reinforcing their dependency on family carers, support agencies and the State. In order to do so, this article draws on qualitative research findings from a project on Housing and Disability conducted in Victoria, Australia, in 2008. As will be shown this dependency is physical, economic and social and is both shaped by, and results in, the marginalization of people with disabilities. This paper argues that, however, it is not dependency in itself that is oppressive but the ways in which it is socially constructed. The Sect. 1 frames the paper within the Australian policy context. The Sect. 2 seeks to develop a theoretical framework through a review of relevant literature on disability and dependency. The Sect. 3 discusses methodology. The remaining four sections examine the ways in which the housing decisions and choices of people with disabilities are constrained by inadequate policies and dominant constructions of disability and dependency.

2 Australian policy context

Until the 1960s people with disabilities in Australia either lived in the family home or in institutions, hostels or other care accommodation separated from mainstream society (Bostock et al. 2000; Quibell 2004; Beer et al. 2006). The International Year of disabled persons in 1981 brought to the fore many issues for disabled people including independent living. The 1986 Commonwealth Disability Services Act (CDSA) talked about the rights of people with disabilities to live in the community rather than segregated settings (Bostock et al. 2000, 2001). In 1991, the CDSA made State and Territory governments responsible for housing and lifestyle services and the Federal Government responsible for employment services (Bridge et al. 2002; Maddison 1998). The 2006 Disability Act consolidated the previous Acts and provided for a more whole-of-government approach to service provision (Victorian Auditor General 2008). This Act was written within a human rights framework and reinforced the transition of the disability support model from a medical to a social model, facilitating more flexible support for persons with disabilities to achieve their individual needs and aspirations (Victorian Auditor General 2008). The 2009 intergovernmental National Disability Agreement aims at helping people with disability to achieve social and economic participation and social inclusion, to offer people with disability choice, well-being and the opportunity to live independently, and to support families and carers. Even though the governments recognize that having access to mainstream services such as housing, education, health and transport is necessary in order to improve outcomes for people with disabilities and their carers, the focus of the Agreement is on specialist disability services (COAG Reform Council 2010). While there is a separate National Housing Agreement focusing on providing affordable housing to all Australians, there is no national agreement to coordinate disability and housing services.

The deinstitutionalization of disability services has resulted in a greater need for community-based accommodation and support for people with disabilities (AIHW 2005). However, this need has not been met adequately. In 2003, 19% of Australians (3, 958,300 people) had a reported disability. Approximately 3.8 million people with a disability were living as part of households in private dwellings, 61% of whom needed assistance to manage their health condition and/or daily living tasks (AIHW 2005). Public housing had the highest proportion of people with disabilities as 41% of public housing tenants of all age groups reported a disability. The Victorian Department of Human Services (DHS) provides shared supported accommodation (SSA) for people with the most severe intellectual disabilities. In 2008, around 4,600 people resided in 914 SSA houses, in groups of four, five or six with 24-h rostered support. People with less extreme but still severe disabilities are supported by DHS to live in the community through the provision of individualized packages such as home help services, equipment, and respite for carers (Victoria Auditor General 2008).

The private rental sector is often inaccessible to people with physical disabilities. Australian State Governments have begun to encourage the building of `accessible’ homes, which are houses built with features that can be easily adapted to people’s changing needs. The Victorian Government is also investigating the possible implementation of minimum mandatory requirements for future house building such as a clear path from the street to a level entry, wider doorways and halls, a toilet suitable for people with limited mobility on entry level and reinforced bathroom walls so that grab rails can be fitted inexpensively if they are needed in the future (Victorian Government 2010). Until these changes are implemented, the lack of universal standards to build houses that can accommodate both people with and without physical impairments and the long waiting lists for suitable public and community housing mean that people with disabilities have very limited housing choices (Beer et al. 2006; Bostock et al. 2000, 2001; Quibell 2004). This lack of choice in housing and the high level of unmet need for community support mean that many people with disabilities continue to live in institutions such as hospitals, nursing homes and group homes in unsuitable or inappropriate forms of housing or are homeless (Beer et al. 2006; Bostock et al. 2000, 2001; Quibell 2004).

It has been argued that the increasing demand for community care is coming from people already living in households rather than those leaving institutions. However, the reduction of places in institutions does not appear to have been matched by the development of appropriate services in the community. As a result, many people with disabilities have inappropriate living arrangements and families and carers lack basic support (Beer et al. 2006).

3 Disability and dependency: a theoretical perspective

Disability studies have put forward a model of social disability to challenge earlier medicalized and individualist accounts that portrayed disabled people as having a deficiency or abnormality (Barnes 1991; Harrison 2004). The advocates of the social model have argued that disability was socially constructed, in that it was the outcome of social and cultural responses to people having a physical, sensory or mental impairment that constituted the ‘disability’ and not the impairment in itself (Barnes 1991; Harrison and Davis 2001; Oliver 1990; Barnes and Mercer 1996). In this approach, it is social structures that disable people who have some mental, sensory or physical impairment so that they are marginalized socially, culturally, economically and politically. However, there are some limitations to the social model. As has been pointed out (Crow 1996; Harrison and Davis 2001; Parr and Butler 1999), the role that impairment, illness and pain play in people’s lives should not be ignored. Chronic illnesses, physical, mental or sensory conditions influence people’s daily lives and sense of identity in different ways, and can place limitations on what they can and cannot do.

This paper argues that the nature and extent of people’s impairment and the ways in which they experience it in everyday life contribute to more or lesser levels of dependency on others. Social factors such as age, gender and cultural, social and economic backgrounds also play a role in the degree of dependency that people with disabilities have on others. This dependency is also much reinforced by the marginalization of disability. Marginalization involves the exclusion from meaningful participation in society (Young 2000; Lloyd 2001). Because people with disabilities are often excluded from the labour market, the majority are dependent on welfare provision for their main source of income and medical treatment. The lack of universal building standards and adequate and affordable housing that can accommodate people with different kinds of impairment and needs for care also plays a crucial role in reinforcing their dependency on family members and agencies for financial, physical, practical and emotional assistance.

Young (2000) argues that dependent persons are excluded from equal citizenship. The dominant social construction of dependency requires ‘a dependent’ to be subject to the often arbitrary and invasive authority of public service providers and other public and private administrators who impose rules that the marginal must obey (Young 2000). Disability activists argue that it is only by gaining independence and autonomy that people with disabilities can have the same citizenship rights as the non-disabled (Keith and Morris 1995; Shakespeare 2000). However, feminist philosophers have argued that dependency in itself does not have to be oppressive (Friedman 1993; Sevenhuijsen 1998; Young 2000). Feminist moral theory has exposed the assumption that full citizenship requires somebody to be autonomous and independent as being derived from a specifically masculine experience of social relations which values competition and individualistic achievement (Gilligan 1982; Friedman 1985; Young 2000). This ‘autonomy model’, which is the dominant model, excludes anyone who is seen as being dependent. Yet, everybody is dependent on others at some point in their lives as infants, through injury, illness and in old age. Disabled activists criticize this feminist view for focusing on the social construction of dependency and not taking into account the ways in which disability is socially constructed (Shakespeare 2000). This paper argues that the ways in which both dependency and disability are constructed are problematic and need to be addressed in relation to each other. Within dominant social constructions of dependency and disability, disabled people are treated as dependents on a minimalist welfare provision and family carers. These constructions are reflected in, and reinforced by, inadequate housing and welfare provision.

Until recently, there has been a lack of literature, particularly in an Australian context, exploring the ways in which people with different types of disabilities are constrained and limited in terms of their housing decisions and experiences. In particular, little research has examined the ways in which inadequate housing provision for people with disabilities contributes to, and reinforces, dependency. This paper seeks to fill these gaps by looking at how the lack of adequate housing reproduces the marginalization of people with disabilities through their dependency on family members and public and private agencies. In order to do so, it draws on the findings of qualitative research on housing and disability. The methodology used in this research project is discussed next.

4 Methodology

This paper draws on 20 recorded face-to-face in-depth interviews conducted with people with disabilities and 20 recorded face-to-face in-depth interviews with family carers of people with disabilities. These were carried out in 2007 in outer western and inner metropolitan areas of Melbourne and in Gippsland, regional Victoria. This qualitative research, which was part of a broader project, investigated housing decisions of people with a disability and those of their carers, the lack of choice, and constraints upon choice with regard to housing and location outcomes for people with a disability, as well as housing choices, preferences and aspirations. It also examined how the housing careers of people with a disability and those of carers of people with a disability were shaped by a range of factors (family life, stage, labour force participation, age, gender etc.) as well as disability. Following the Australian classification of disabilities, we recruited people who had a mobility impairment, a sensory/speech disability, a mental illness, a cognitive disability and an acquired brain injury. Respondents were recruited by contacting people who had agreed in a previous survey to participate in further research, and contacting directly carers’ and disability organizations.

This research posed a number of challenges. Firstly, several respondents did not fit neatly into the pre-defined categories of disability. Indeed, several people had multiple disabilities. Secondly, interview questions had to be adapted in relation to the very different types of disability of the people interviewed or those they cared for and the particular issues that they raised. Thirdly, this research posed a number of challenges for the analysis and presentation of the data. The analysis of qualitative data looks for common themes and patterns within and among interviews. However, the diversity of respondents in terms of having very different types of disability with therefore very varied housing requirements and circumstances, ages, and cultural backgrounds made the analysis more complex. In addition, both people with disabilities and family carers of people with disabilities were interviewed. In spite of the variety of the data, the analysis was able to reveal patterns and themes for different groups of people interviewed.

This paper focuses on the influence of housing provision on people with disabilities and therefore is based predominantly on findings from the interviews with people with disabilities. However, it also draws on a few interviews with family carers. All respondents’ names used in this paper are pseudonyms.

The next sections examine how the constraints and limitations that people with disabilities encounter in terms of their housing decisions and experiences contribute to them being dependent on others—particularly family members or partners—for financial, physical, practical and emotional assistance. At the same time, people’s housing decisions and experiences and their degree of dependency are due to a number of interrelated factors: the nature and extent of their impairment, their gender, age, relationship with family members and extent of support and care available, their social, economic and cultural positions, their identities and the overall marginalization of people with disabilities.

The vast majority of people with disabilities and family carers interviewed concurred that there was very little housing that was affordable for, and suitable to the needs of, people with different types of disabilities. The overall priority of people with disabilities was to find secure, permanent and affordable housing that suited their physical, psychological and social requirements either now or in the future. Most also wanted to have some level of independence, but this was often difficult. Four sets of constraints impacted on their housing decisions, aspirations and general wellbeing and reinforced their dependency on others in the process: physical adaptations and access; financial limitations; location and place; and lack of adequate residential care and support. Each is explored in turn, showing how people with disabilities engage differently with the lack of adequate housing within the confines of their marginalization.

5 Physical adaptations and access

Private rental is often not a viable option for people with physical impairments, both because of the rent cost and the difficulties in being able to make renovations and adaptations to a rented house or flat. This is also linked to the fact that very few properties have been built to be disabled friendly. Many houses have steps, narrow doorways, and small bathrooms and kitchens. Lack of access to buildings in general was also an issue raised by the majority of people with mobility impairment interviewed. For example, Jodie, 54, living in an inner northern suburb of Melbourne, said:

And for renting, because they are putting up all these new housing developments everywhere in the inner city … and none of them are accessible. I look at new housing going up every day around here and just go, oh, here we go again, three steps at the front, fantastic, that means that place is no good and there will be one, two, three to a block … I just think they are very retrograde on that stuff.

As a result, most housing required physical adaptations for people with mobility impairment and multiple disabilities. Because of the unsuitability of private renting for the majority of people with physical impairment, one option was to live with family members who owned a property and were able to have physical adaptations done. The type and extent of adaptations depended on the nature and extent of the disability over time, the type of dwelling that they occupied, the age of the person with the disability, and the age and physical ability of the regular carer, for those who had one. Some adaptations involved major renovations while others were more minor. Many of the houses that people had lived in before were not suited to the use of a wheelchair because the doors and doorways were too narrow or the rooms, especially the bathrooms, were too small to accommodate the equipment that some people with disability needed. As a result, people who already owned a house or lived in a house that was owned by a family member had to find another house that was more suitable for the required adaptations. For instance, Irwin, 55, living in rural Victoria, who had twin daughters in their 20s with severe multiple disabilities including mobility and intellectual impairments, could not stay in the house that they had initially bought, because it was impossible to adapt it to suit the requirements of his daughters:

When the girls were born, we found the house we had was very hard to utilize for the girls. It was alright while the girls were little, but when they started getting up to ten, eleven, they started to get too heavy to lift all the time, and because they both need cranes, hoisting gear and all this. So we went looking for a house that we could set up with wheelchair access … It was just going to be too costly to do the work and set it up … It was only single storey, but it had one level here and another step up here and another step down over here.

People with physical disabilities could rent public or community housing that was adapted to their needs. However, only six per cent of Australian housing stock is public and community housing. As a result, even with priority access, it can still take several years for people with disabilities to obtain social housing. For example, Lorna, 48, married, had developed multiple sclerosis in her late 20s and her condition worsened progressively. She could still walk very short distances inside the house with a walking stick but was mostly wheelchair bound. She was living in public housing in rural Victoria. They had rented privately before when she was still able to walk but had to wait 3 years before getting a property. The unit they were allocated already had a ramp in the bathroom but she needed more adaptations so it took several months before they could move in:

I love this unit here, I really do, but they had to put in a concrete ramp front and back for me and rails all around, and the previous tenant had already put rails in the bathroom so that was all done. But the concrete took ten months or so before that all happened.

Meanwhile, they were renting an old house that was ‘cold and damp’ and impacted negatively on her medical condition.

Thus, so far a lack of design and physical housing standards that could accommodate people with different kinds of disabilities as well as the able-bodied means that people with mobility impairment have been excluded from much of the public and private rental sector. In doing so, this lack of standards restrains their housing and life choices. As a result, people with mobility impairments are often dependent on family members who own their housing, are willing to live with them, take on the role of carer, and able to have their housing adapted. As we will see in the next section, another factor that is interrelated is the low income that the majority of people with disabilities have to live on.

6 Financial limitations

People with disabilities talked about experiencing serious financial constraints when their main or only source of income was the Disability Support Pension (DSP). This was another limitation as to the kind of housing that they could have. Private renting was unaffordable for most people relying on DSP or Carers Pension. Even people with disabilities who did not require major physical adaptations to their housing often could not afford to rent privately except in shared or boarding houses and caravan parks. Several people with a mental illness had tried renting privately but had either been evicted or had had to leave because the rent was too high in relation to their income. For instance, this had happened to Daniel, with schizophrenia, who was now living in community housing:

R: I tried private rental in [north-western suburb] and living on a pension and paying private rental … It was extremely hard. I was evicted … I couldn’t maintain the rent, yeah … It was a friend that I played cricket with, it was one of his properties. He sort of said, yeah, that’s fine, as long as you maintain the rent then we’ll have no problem. But yeah, I fell behind.

Most of the people in the study who could do some paid work were only able to do so part-time or on a casual basis. All Australian income support payments are means tested, except for DSP (Blind). Consequently, paid employment did not always mean that people would be better off financially. For instance, Tabitha, 22, who had muscular dystrophy affecting her mobility among other symptoms, lived in public housing next to her parent’s house. She thought that she might be offered a full-time position working with people with disabilities but she was worried about what would happen if she lost her DSP:

I’m a bit concerned about that, yes. If I earn too much money I will lose my disability pension and there goes, you know, I won’t be able to see a doctor, I’ll have to pay and things like that … I am a bit concerned about that because it is a bit of a security net, you know? … Like I only get my granny flat because I have a disability pension … So I might lose my granny flat as well. So I don’t really want to do that.

Having a degenerative disease and needing ongoing medical treatment, Tabitha did not know how long she would be able to work full-time, and would be unlikely to earn enough to cover all the costs that she incurred if she had to pay for medical treatment. For all the people with disability in the study, having security and stability both financially and in terms of housing was extremely important to them and to their carers because their health was very unstable. In addition to receiving a low income, people with disabilities and family carers also had to pay themselves for some of the cost of disability equipment and physical adaptations as available grants only covered partial costs.

People who did manage to work part-time also struggled financially as they usually did not earn much more than living on DSP. For example, Jodie, 54, who had problems with her mobility after having contracted polio as a child, was living with her same-sex partner in a house she owned in a northern suburb. She had only been able to find casual work on and off over the years and had not been able to work full-time due to her disability. She had rented privately, but could not have afforded to continue doing so if her father had not been able to buy a house for her to live in:

R: I got a terrible job at Melbourne University part-time which was data entry really in the pathology department where they brought poo [laughs] every day in little pots… Every day these poo pots coming in and just to type them all up. That was every morning until midday and then I got $90 a fortnight I think for that, so I lived on that… It was just a very frustrating number of years. And eventually I got so poor and couldn’t afford my rent, and my father decided that he would buy a little house in Melbourne and I could live in it. He was quite well off at the time, being an architect.

Only five other people with disabilities interviewed besides Jodie owned their own homes. Two of them had been able to have their house built (or rebuilt) with a pay-out as they became paralyzed after road or work accidents, two others already owned their homes before they lost their sight, and another vision-impaired respondent was able to have his house built as he and his partner worked full-time. None of the people with disabilities who had to rely on income support would have been able to buy their own homes without either substantial financial assistance from a family member or accident compensation unless they owned property before they became disabled. People with a disability who did not have parents who could afford to buy housing for them or could not house them rent-free, who were not able to work or only on a casual basis, were not entitled to any compensations and did not have any savings, lived in poverty. For instance, Alistair, 67, widower, with mobility and sensory impairment, whose only source of income was DSP, lived in a boarding house in a northern suburb as he could not afford to rent privately by himself. He was hoping to find paid work even though he knew that at his age it would be extremely difficult:

I’m just saying at the moment, personally, I get $10.50 for spending and $10 for cigarettes, that’s out of my pension. That’s all I get a week, $20.50 … so that’s why I’d like a job, just to be a little bit independent, to have some money coming in.

There were several people, like Alistair, who felt that they could do some paid work, at least on a casual basis. However, even when their age was not a hindrance, it was very difficult for people with disabilities to find paid employment. Most of the people with major disabilities who were in paid employment or had been in the past had only been able to find work that was related to disability through their voluntary involvement with disability or community organizations. For instance, Bob, 22, who had lost his sight as a child, and lived in Gippsland, had been trained as a mechanic by Vision Australia. However, he could not find paid work as a blind mechanic. According to him, the problem was that the customers would not understand, especially in a small country town:

If someone walks in and sees a blind person working on a car, it’s a bit, you know, drives customers away and that sort of thing.

As shown here, people with disabilities who would be able to do some paid work are often excluded from much of the labour market because they have a disability and as such are treated as ‘different’. Others are not able to do paid work because of the nature and extent of their impairment, even though some might possibly do so if the labour market was able to accommodate people with disabilities and illnesses by offering more flexible working conditions and better physical access. Those who can work on a part-time or casual basis are usually not much better off financially than those who rely on welfare benefits because of the low wages that this kind of employment usually attracts, its insecurity and the additional medical, equipment and adaptation costs that most people with disabilities incur. Those who do find regular paid employment often do so in the disability sector rather than in mainstream society. The majority of people with long-term disabilities have to rely on income support that is very low and struggle financially on a day-to-day basis. This excludes them further from being able to rent privately and owning a home. It also reinforces their dependency on both welfare provision and/or family members for financial assistance and housing.

7 Location and place

The location and the area in which people with disability lived was very important for many of the respondents. Firstly, location was important in terms of physical access to services. People who could not walk far or only use a motorized wheelchair, or relied solely on public transport, needed to be centrally located, either in an urban or regional centre. For example, Samuel, vision-impaired, living in a northern suburb close to the Melbourne CBD, said:

Inner city was really important. Because I can’t see very well, because I don’t drive, I walk everywhere or I take a lot of public transport.

Samuel, who worked full-time in a disability organization, had been able to have a house built in an area and location that suited him. However, some of the people who had not had this opportunity and did not drive found themselves having to live further away from services and facilities than they would like.

It was difficult for some of the people with a disability and carers who lived in Gippsland to travel to Melbourne several times a year for medical treatment. For example, Paula, 46, married with three children, was the carer for her 10-year-old daughter, Katie, who was born with a rare condition that left her severely disabled and had many ongoing health problems. They lived in a small village thirty kilometres away from the nearest town. Even though they did not have to travel to Melbourne for medical appointments as often as when Katie was younger, they still needed to go there at least twice a year and fit in as many appointments over a few days as possible. There was also the problem of finding a place for them to stay that could accommodate Katie and Paula:

So roughly two trips to Melbourne to the Children’s [Hospital] where we do up to about 10, I think the maximum has been 13 appointments in three days. We just go from one to the other to the other, get it all over and get out of the Children’s … We have been made aware of Very Special Kids in Melbourne. Thank God for them. They have parent accommodation at the back at no cost. Katie stays in the house in the hospice on occasion but not very often. I usually keep her out the back with me.

Travelling for medical appointments from regional Victoria to Melbourne and fitting in so many medical appointments and treatments was very tiring for the disabled people and the family members who accompanied them. However, none wanted to move to Melbourne because they were used to country life.

Secondly, location was also important in order to be near social and support networks. People who had not been able to buy housing and either lived in housing owned by a family member or in social housing sometimes resided in areas that were far from friends and/or family members and support services. This was particularly a problem when they were not able to drive. For example, Cynthia, 52, wheelchair bound, unable to drive, lived with her son in community housing in Darebin. She had asked for housing in other northern suburbs closer to the CBD where she had previously lived, and where she had family and friends. However, as this was unavailable, she was living in an area where she did not know anybody and was further away from her family and friends:

I: You would have liked to be closer to the city?

R: For my son’s sake. All his friends were around Carlton and Brunswick. I thought, for his sake, and again most of my friends …

I: I mean, you had to take this place or you didn’t have the choice?

R: Well, if I didn’t take this place I could have been sent even further out.

She could not go anywhere by herself, and even though her sister and some of her friends visited, this was not as frequent as when she lived closer to them. As a result, she felt more isolated. It was important for Cynthia to be independent, but the location of her housing meant that she had to depend on a professional carer or family members in order to go shopping and visit people.

Being isolated and not having friends was already a problem for many of those interviewed because of the stigma that people with disabilities still face. Several told how some friends or family members avoided them after they became disabled, and many talked about people staring or making comments in public. Thus, living further away from the few people they knew or a support network, if they had one, reinforced their isolation. This could also reinforce their dependency on family carers and/or partners. This dependency could also be very gendered. For example, Harriet who was paralyzed as a result of a car accident, and her husband who was her carer, lived on a two-acre property 30 kilometres away from the nearest town. She felt very isolated and it was even difficult for professional carers to go to their property, but her husband Nigel did not want to move closer to the town. He was happy to drive her to the town and accompany her everywhere but this meant that she was totally dependent on him, both at home and outside the home:

H: He’s built this house and he says he doesn’t want to leave it, so …

N: We’re very comfortable where we are.

H: We’re comfortable but I feel very isolated nevertheless … Nobody pops in because it’s too far out of town. That’s why I’ve said to Nigel, well, if you want to stay here you’ve just got to be prepared to drive me to [nearest town] for all my things.

N: Well, I do.

In this case, there was double dependency and marginalization, as a woman dependent on her husband and as a disabled woman that resulted in her being totally dependent on her husband for care, support, transport and socializing.

As seen here, place and location was very important for people with disabilities, both in terms of access and being near people who could give them support. However, the limited housing choices that people with disabilities often had meant that they also had limited choices in terms of the area and location where they wanted to live. This reinforced their isolation, sense of marginalization and dependency on carers. When a woman was made being even more dependent on her male partner, as in the example above, marginalization was compounded by social constructions of both disability and gender.

8 Care and assistance

The need for care and assistance and the lack of housing options providing adequate care and assistance for people with disabilities was another major problem that restricted their housing choices. Most of the people with a disability interviewed and those who were looked after by the carers interviewed needed some form of help and assistance either on a full-time or part-time basis. The amount and nature of what was required depended on the nature and extent of the disability, whether they needed physical help or assistance of a more supervisory nature or both, whether they had a partner or relative living with them and, if so, the amount of help given by the partner or relative. A few people who were single, divorced/separated or widowed and were able to be independent or partly independent could manage with the help of professional carers and/or home help without needing a live-in carer.

People with multiple disabilities, including mobility impairment, who needed 24-h care had very few alternatives other than living with one or more family member(s) who took on the role of carer(s). Travis, 63, married, Gippsland, was the father of three adult children including Jade, 33, who had Multiple Sclerosis and epilepsy. Jade lived in a house owned by his brother who was overseas but he could not live by himself and professional carers are not allowed to stay overnight. As Travis was very involved with disability and carers groups, he was able to find a couple who were professional carers and were looking for housing, who were willing to live there rent free and were paid as professional carers for a certain number of hours a week. Jade also stayed with his parents on week-ends. Travis said:

The whole thing is very flexible. If they had something on and, you know, three nights or whatever he just comes home but, in theory, the practice is that he spends Monday to Saturday morning with them, there’s another carer picks him up and takes him out for four hours on a Saturday morning and they return him to our place, he stays at our place Saturday and Sunday night and we return him back to them before tea on Monday.

I: Okay, right. So that works well for you?

R: It works pretty well. Gives us a break, gives Jade a break from us, it gives him, you know, some sort of independence if you like.

So even though Jade still needed care and assistance on a regular basis, it was important for both parties that as an adult he should not be totally dependent on his parents as if he was still a child. However, this arrangement was only possible because Travis could afford it financially as he was paying the rent to his other son, and he had connections to disability and carers’ organizations.

People with mental illnesses tended to have many housing problems. They were physically able to look after themselves but their illness often prevented them from doing so. Most needed some level of supervision, as was reported by several family carers, as they could forget to take their medication which would then result in psychotic episodes and hospitalization. However, several people found it too difficult to live with a family member who had a mental illness and some even feared for their own safety following a psychotic episode. In addition, several of the people with a mental illness and acquired brain injuries interviewed came from dysfunctional and unstable families (with at least one abusive parent) so that in these cases living with their parents was not possible or was further detrimental to their mental health if they did. As a result, those who could not live with their family tended to live by themselves in public housing or community housing or lived in boarding houses, hostels and group homes with other people having similar illnesses.

People with mental illnesses tended to have a high rate of residential mobility with some periods of homelessness as their housing was often inappropriate and made their illnesses worse. For example, Daniel, 45, single, with schizophrenia, renting from a housing association, had waited 2 years before being allocated a public housing flat in an area with social problems. He then lost his flat after a friend of his, also with a mental illness, stayed with him and destroyed the property. After that he tried to rent privately but he was evicted as he could not afford the rent on income support. He then went to a boarding house which made his mental health worse:

It was horrific for me, having my disability, and again there were guys with problems with substance abuse … I always felt intimidated in that environment.

Through a case worker, Daniel obtained transitional housing but as they wanted to renovate, he moved to two other boarding houses where the living conditions were also bad. However, he stayed in one of them for a couple of years because he became friends with another boarder before finally obtaining community housing.

In some instances, living in public housing could also be very detrimental to people with mental illnesses, particularly when, as for Daniel, they were allocated housing in areas with a high concentration of social problems. It can also be very difficult for people without adequate professional and/or family support and care to be able to make housing and other life decisions. In addition, asking for a transfer to another housing property can be difficult and lengthy, causing additional stress without guaranteeing better living conditions. For instance, Vivian, 42, single, three children, who had a bipolar disorder, had lived in public housing in a problem area. She had lived there for 6 years in spite of the detrimental effect it had on her mental health. She had asked to be moved after a few years but it was only because a worker from a community organization helped her that she was finally allocated a house in a better area:

My flat got broken into. I started to deteriorate in my health, in my mental state of mind. My daughter was bullied. My daughter couldn’t even go out in the playground by herself. She got her – they ganged up on her. This woman, this adult woman, threatened my daughter to rip her f’n’ head off in the playground. I had got assaulted so many times. I went downhill. I went so far downhill that I – that’s when I ended up becoming practically agoraphobic. My depression went right down. I didn’t shower because of what was going on with the people around me and what they were doing and, because I started to drink, you think you can trust them. They stole money out of my purse. They stole my medication, you know.

The majority of people with mental illnesses in the study, like Vivian and Daniel, had some limited assistance and support from community organizations, but they were not regularly monitored by a psychiatrist and psychologist, and had little support from their families.

The minority of people with cognitive and mental illnesses who had lived in supported accommodation with on-site care had found that the level of care was inadequate. Jackson, 60, had found a privately owned residential home for his 25-year-old son Terry who had a cognitive disability. Jackson wanted to place him in a state-run facility but, as there was a very long waiting list, he took out a bank loan to put him in a private home. Even though there was a carer on site, Jackson felt that this was not enough care for his son whose condition deteriorated as a result. He took him out for a while and brought him back after having talked to the director. Even though they increased the carer’s hours, Jackson was still not satisfied with the level of care:

I went to pick him up a few days ago for the holidays and there was – one of his drawers was open and there was a whole pile of clothing sort of half stuffed in it, and it was wet. He’d washed it and hadn’t dried it. Another drawer I couldn’t get open. Anyway, I went back a couple of days later. The reason I couldn’t get it open, he’d put clothes in there wet some time ago and it had warped the whole section of the cupboard.

Therefore, people’s need for care arose from the extent and nature of their impairment as well as the lack of adequate housing and support. This lack of adequate housing and care either reinforced people’s dependency on family members or led them to live in conditions that impacted negatively on their illnesses or disabilities and general wellbeing.

9 Conclusion

This paper has argued that a shortage of affordable and adequate housing and inadequate social care for people with disabilities contribute to their marginalization and reinforce dependency on welfare institutions and agencies. However, with a process of deinstitutionalization in Australia and an insufficient provision for community care, this dependency has fallen predominantly on family carers. Because people with disabilities have few employment opportunities, especially on a full-time basis, most have to depend on low welfare benefits in the form of a DSP. As only DSP Blind is not means tested, people with other kind of impairments who can do some casual or part-time paid work have this extra income deducted from their pension. Thus, they are trapped in poverty unless they are able to work full-time in well paid positions, something that is impossible for the majority of people with disabilities because of both the nature of their impairment and social attitudes that exclude and marginalize them. Consequently, people with disabilities are made dependent on welfare systems that trap them into poverty and dependency. They are also made dependent on family members, women for the most part, who take on the role of full-time carers and receive very low welfare benefits for doing so in the form of the Carers Pension (Saugeres 2008).

It has been shown in this paper that the shortage of adequate and affordable housing in Australia compounds the dependency of people with disabilities on family members. This can be financial as most people with disabilities are not in a position to afford buying a home or renting privately. In addition, the limited amount of social housing provision, lack of universal housing standards that can accommodate people with different degrees of disability, and inadequacy of care and housing provision means that many people with disabilities have few other alternatives than living with relatives in their homes. If they do not have any family member who can house them and take on the role of carer, they are often placed in housing that does not suit their requirements. As discussed, inadequate housing can have a negative impact on people’s illnesses and disabilities whether it is due to poor-quality housing, housing location that reinforces isolation or sense of fear, housing with inappropriate level of care, or general unsuitable living conditions.

Housing therefore plays a crucial role in reinforcing the dependency of people with disabilities. Those interviewed wanted to have some level of independence but this was extremely difficult because they lived within social conditions that limited their ability to do so. At the same time, the nature and extent of their impairment and the ways in which they constructed their identities also placed them in positions of more or lesser dependency on family members and other individuals. However, as Young (2000) has argued, dependency in itself is not oppressive, we are all dependent on others at some stage in our lives as children or when we are ill. It is the social construction of dependency and disability that reproduces structures, policies and attitudes that create unnecessary hardships for people with disabilities.

Acknowledgments

I would like to thank Kath Hulse and Kathy Arthurson for their comments on earlier versions of this paper. I also wish to acknowledge the Australian Housing and Urban Research Institute which provided funding for the research on which this article was based. The views expressed in this article are those of the author not the Institute.

Copyright information

© Springer Science+Business Media B.V. 2010