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The legal needs of people with different types of chronic illness or disability, Justice issues paper 11   

, 2009 Consistent with overseas research, Justice made to measure: NSW Legal Needs Survey in disadvantaged areas reported that people with a chronic illness or disability are particularly vulnerable to experiencing legal problems and have difficulty resolving these problems. However, `chronic illness or disability` constitutes a diverse range of conditions and very little research to date has compared and contrasted the legal needs of people with different types of illness or disability. Using data from the NSW Legal Needs Survey, this paper compares people with different types of chronic illness or disability on their incidence of legal problems, their rates of taking action in response to these problems and their resolution rates.


Introduction


Until recently, there has been little rigorous, comprehensive empirical research examining the access to justice and legal needs of people with a chronic illness or disability. This gap in research is arguably surprising given the long-standing acknowledgement that such people experience hardship in many aspects of life (O'Grady, Pleasence, Balmer, Buck & Genn 2004).

Chronic illness or disability and disadvantage

People with a chronic illness or disability have been identified as a group suffering multiple disadvantage (ABS 2004c; Barnes, Mercer & Shakespeare 1999; O'Grady et al. 2004). For example, Australian census data shows that people with ill-health are more likely to be victims of crime, be unemployed, have low incomes and have low levels of educational attainment. In the United Kingdom, people with a chronic illness or disability have been reported to be more likely to live in public housing, less likely to be employed and more likely to have low incomes (O'Grady et al. 2004). Indeed, given the increased risk of people with a chronic illness or disability to multiple types of social and economic disadvantage, some authors have argued that this group is the 'most socially excluded' of all disadvantaged groups (e.g. Howard 1999).

Chronic illness or disability and social exclusion

In broad terms, social exclusion refers to a lack of participation in mainstream societal activities and a lack of access to the standards of living, rights, goods and services enjoyed by the majority of society (Arthurson & Jacobs 2003). Social exclusion is purported to highlight the multidimensional nature of disadvantage. That is, social exclusion is argued to have multiple causes (e.g. poverty, unemployment, poor education, family breakdown, high crime environments) and a range of negative outcomes in social, economic, legal, political and cultural areas (Arthurson & Jacobs 2003; O'Grady et al. 2004; Saunders 2003).

The notion that people with a chronic illness or disability often face social exclusion fits with the shift in recent decades away from a purely medical model of disability and towards a more social model of disability. The medical model defines disability as being located within the body or mind of the individual according to criteria of pathological impairment, while the social model defines disability in the context of a disabling environment (Barnes et al. 1999; Hedlund 2000; Humphrey 2000; Mulvany 2000; O'Grady et al. 2004). In the social model, disability is seen as something imposed by society over and above biological impairment. That is, it is not the biological reality of the impairment alone that determines disability, but rather the consequences of this impairment resulting from social contexts, communications and conceptualisations (Hedlund 2000). The social model attempts to empower people with disabilities as citizens with rights, and argues that the key to overcoming many of the problems faced by such people is the removal of societal barriers that prevent them from accessing their rights (Barnes et al. 1999; Humphrey 2000; Mulvany 2000; O'Grady et al. 2004).

In recent years, it has been acknowledged that the medical and social models of disability are not mutually exclusive, and it has been argued that both biological and social factors are important in conceptualising disability (Hedlund 2000; Barnes et al. 1999).

Chronic illness or disability and legal needs

Consequently, given the literature suggesting that people with a chronic illness or disability can be a 'disadvantaged', 'socially excluded' group, what is established about their access to justice and legal needs? Are they particularly vulnerable to experiencing legal problems? Are they particularly likely to face barriers when they try to access justice?

Until the last decade or so, large-scale legal needs surveys have not assessed the illness or disability status of respondents, so the vulnerability of people with a chronic illness or disability to legal problems had not been rigorously examined (Pleasence, Balmer, Buck, O'Grady & Genn 2004a). Even Genn's (1999) large-scale survey in England and Scotland did not measure illness or disability status.

However, a few recent large-scale legal needs surveys have measured illness or disability status. The emerging pattern from these surveys is that people with a chronic illness or disability have increased vulnerability to experiencing a wide range of legal problems, including civil, criminal and family law problems (Coumarelos, Wei & Zhou 2006; Currie 2007; Pleasence, Balmer & Buck 2006; Pleasence, Buck, Balmer, O'Grady, Genn & Smith 2004b). Furthermore, these surveys indicate that such people have lower resolution rates for their legal problems (Coumarelos et al. 2006; Curry 2007).

The English and Welsh Civil and Social Justice Survey has been conducted in 2001, 2004 and, since 2006, on a continuous basis by Pleasence and his colleagues. According to the 2001 survey, people with a chronic illness or disability had relatively high rates of 14 of the 18 types of justiciable problems examined by the survey (Buck, Balmer & Pleasence 2005; Pleasence et al. 2004b).1 Using the same survey data, O'Grady et al. (2004) reported that people with a chronic illness or disability were not only more likely to experience justiciable problems compared to other respondents, they were also more likely to experience more justiciable problems, particularly those related to issues of social exclusion such as housing and welfare benefits. They concluded that, due to their social exclusion, people with a chronic illness or disability are more vulnerable to experiencing spiralling problem sequences which are likely to have serious negative effects on their life circumstances. Furthermore, although people with a chronic illness or disability did not differ from others in the types of strategies they used in response to their legal problems, they took longer initially to contact an adviser (Buck et al. 2005; O'Grady et al. 2004).

The 2006 English and Welsh survey (Pleasence et al. 2006) reinforced the results of the 2001 survey regarding chronic illness and disability.

Coumarelos et al. (2006) reported on a survey of a broad range of legal needs in six disadvantaged areas of New South Wales (NSW) in Australia. They found that people with self-reported chronic illness or disability had increased rates of nine of the 10 most frequent types of legal events examined, including civil, criminal and family events.2 Coumarelos et al. (2006) also reported that, even though people with a chronic illness or disability sought help at similar rates to others when faced with legal events, they were less likely to achieve resolution.

Currie (2007) reported on a national survey of legal needs in Canada. He examined two indicators of illness or disability — a self-reported indicator and the receipt of a disability pension. Both indicators were related to a higher incidence of 12 out of the 15 types of civil justice problems examined.3 The two indicators were also related to increased incidence of multiple civil justice problems and to reduced resolution rates.

A number of other legal needs surveys have reported increased incidence of at least some types of legal events for people with certain types of illness or disability. For example, in Oregon (United States), Dale (2000) found high levels of legal need among people with a mental disability, particularly for problems related to public benefits and family law. Dale also found high levels of legal need among people with a physical disability, particularly concerning discrimination, wills and estates, consumer and health care matters. In Washington State, the Task Force on Civil Equal Justice Funding (2003) reported that people with physical disabilities had relatively high rates of consumer, health, estates and trusts issues, while people with mental disabilities had relatively high rates of legal issues related to housing, municipal services and public services.

Path of causation

Evidence is beginning to suggest that the association of chronic illness or disability with legal problems may well be bi-directional. For example, Pleasence et al. (2004a) cite studies indicating that housing-related problems, homelessness, family problems and domestic violence can emerge for people with long-term physical or mental incapacity. They also cite studies suggesting that poor quality housing, relationship breakdown, domestic violence, unemployment, mortgage indebtedness and other debt problems can result in psychological or physical ill-health.

The results of the English and Welsh Civil and Social Justice Surveys are also consistent with a two-way relationship between chronic illness or disability and legal problems. In addition to examining the incidence of legal problems among people with a chronic illness or disability, these surveys also examined whether stress-related illness and various other adverse consequences occurred after the legal problems were experienced. For example, examining housing rights problems, Pleasence and Balmer (2007) reported that such problems are not only associated with mental illness, but may also have a role in bringing about or exacerbating mental illness. About half of those who reported that stress-related ill-health followed housing rights problems went on to receive medical treatment as a result. Furthermore, Pleasence, Balmer and Buck (2008) found that adverse health consequences reportedly followed over one-third of the legal problems experienced and led to a significant use of health services.

Diversity of chronic illness or disability

'Chronic illness or disability' constitutes a diverse range of conditions, including chronic physical conditions, mental health problems, learning disabilities and physical disabilities. These conditions can also vary dramatically in their onset, severity, longevity and debilitating effects. Very little is currently known about how the diverse nature of chronic illness or disability affects its relationship with legal needs. For example, is the severity of the illness or disability an important factor in the experience and resolution of legal problems? Are all types of chronic illnesses and disabilities equally associated with increased vulnerability to legal problems and difficulty resolving legal problems?

With regard to severity, the 2006 English and Welsh Civil and Social Justice Survey found that the relationship of civil law problems to chronic illness or disability increased with the severity of the illness or disability (Pleasence et al. 2008).

With regard to the type of chronic illness or disability, recent research suggests that people with a mental illness may be a particularly vulnerable group. Pleasence and Balmer (2007) found that the incidence of housing rights problems was highest for those who reported a mental illness (26%). The incidence of housing rights problems among those with a chronic illness or disability but no mental illness was considerably lower (12%), and was similar to those who reported no chronic illness or disability of any type. Pleasence and Balmer (forthcoming) report elevated incidence rates across many different types of legal problems for people with a mental illness relative to people with other illnesses or disabilities. Qualitative research in Australia further supports the idea that people with a mental illness are a vulnerable group who may experience a number of legal problems and face a range of barriers in accessing justice (Karras, McCarron, Gray & Ardasinski 2006).

However, there is currently a lack of comprehensive empirical research that compares and contrasts the access to justice and legal needs of people with different types of chronic illnesses or disabilities. Some of the recent legal needs surveys that examined chronic illness or disability have used global measures of illness or disability and have not recorded the specific types of illness or disability in their samples (Currie 2007; Pleasence et al. 2004b). As a result, the question of whether different types of chronic illness or disability are associated with different levels of vulnerability to legal problems and different resolution rates has generally not been a focus of these surveys.

Implications for service provision

The discussion above highlights the overlap between having legal problems and having a chronic illness or disability. However, legal needs reflect a wide range of legal rights and obligations related not only to health, but also to many other areas of physical and social well-being, including welfare, housing, education, employment, debt, citizenship, family relations and policing (Coumarelos et al. 2006; Pleasence et al. 2004b; 2006). This interconnectedness of legal problems with other non-legal life problems has resulted recently in a number of authors stressing the need for better coordination between legal services and a broad range of human services, including health, social, welfare, housing and financial services (Balmer, Pleasence, Buck & Walker 2006; Coumarelos et al. 2006; Forell, McCarron & Schetzer 2005; MacDonald 2005; Pleasence et al. 2004b; 2006; 2008; Scott & Sage 2001). Given that some people have multiple, complex and interconnected legal and non-legal needs, a complete solution to their problems may require not only legal advice or assistance, but also a broad range of non-legal support services (Coumarelos et al. 2006; Forell et al. 2005). It has not only been argued that broader non-legal support may be required to achieve effective legal resolution, but also that providing legal assistance for legal problems may sometimes have salutary effects on other areas of life, including positive health effects (Currie 2007; Balmer et al. 2006; Pleasence et al. 2008).

In the case of people with a chronic illness or disability, it is increasingly being recognised that the prevention, identification and resolution of legal problems within this demographic group should be treated as both a public health and justice policy objective, involving the integration of health and legal services (Balmer et al. 2006; Coumarelos et al. 2006; Currie 2007; Pleasence et al. 2004b; 2008). For example, in the United Kingdom, despite the difficulties faced through integrated health and advice initiatives such as Health Action Zones and Community Legal Service Partnerships, Pleasence and his co-workers argue that the more effective coordination of health and legal services is likely to improve both health and justice outcomes for this demographic group (Balmer et al. 2006; Pleasence et al. 2004b; 2008).

The type of coordination between health and legal services that might be particularly useful for people with a chronic illness or disability would be better informed by further investigation into the specific nature of the relationship of legal needs with chronic illness and disability. For example, if the increased vulnerability to legal problems observed for this demographic group was due solely or particularly to one type of illness or disability, say mental illness, then an important priority might be to work towards the effective coordination of mental health and legal services.