JI11 Chronic Illness
Transcript Of JI11 Chronic Illness
Paper 11 • May 2009 • ISSN 1834-7266
The legal needs of people with different types of chronic illness or disability
Christine Coumarelos and Zhigang Wei
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).
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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
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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 housingrelated 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
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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 nonlegal 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
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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.
NSW LEGAL NEEDS SURVEY
As noted above, in their monograph entitled Justice made to measure: NSW Legal Needs Survey in disadvantaged areas, Coumarelos et al. (2006) reported on a legal needs survey conducted in 2003 in six local government areas of NSW. The survey was administered via telephone interviews to 2431 residents aged 15 years or over. The six areas covered geographically diverse areas of NSW, had high risk scores for socioeconomic disadvantage, and comprised urban, rural and remote areas.4
The survey measured 101 different ‘legal events’, that is, events that have the potential for legal resolution (see Appendix 1).5 These legal events were categorised into the following 15 groups:
• 11 groups of civil law events — accident/injury, business, consumer, credit/debt, education, employment, government, health, housing, human rights and wills/estates
• three groups of criminal law events — domestic violence, general crime and traffic offences
• one group of family law events.
Of the 2431 participants surveyed, 508 or 20.9 per cent reported that they had one or more chronic illnesses or disabilities.6 Coumarelos et al. (2006) found that these 508 participants with a chronic illness or disability, when compared with other participants, had: • increased vulnerability to a wide range of legal
events • similar rates of seeking help for their legal events • reduced rates of resolving their legal events.
Given their high incidence rate and low resolution rate, Coumarelos et al. (2006) argued that meeting the legal needs of this group should be a top priority in legal service provision.
AIMS OF THE PRESENT STUDY
The present study aimed to further elucidate the nature of the access to justice and legal needs of people with a chronic illness or disability by reporting on some additional analyses of the data from the Coumarelos et al. (2006) survey.
Six specific aims were identified for this present study. The first two aims involved further comparisons between the group of participants with a chronic illness or disability and the group without a chronic illness or disability. More specifically, the first two aims investigated whether participants with a chronic illness or disability differed from other participants in terms of: • their experience of multiple legal events (Aim 1) • the type of adviser they first consulted in
response to legal events (Aim 2).
The present study also involved comparisons between participants with different types of chronic illness or disability. Coumarelos et al. (2006) reported on participants with a chronic illness or disability as a single group, and did not examine whether participants with certain types of chronic illness or disability are even more likely than others to experience legal problems and to require
assistance to resolve those problems. The present study investigated whether people with different types of chronic illness or disability differ in the legal problems they experience and the outcomes they achieve. For comparison purposes, the participants with a chronic illness or disability were divided into five sub-groups based on the type of chronic illness or disability. More specifically, the last four aims of the present study were to examine whether the five sub-groups of chronic illness or disability differed in terms of their: • experience of legal events of any type (Aim 3) • experience of different types of legal events (Aim 4) • actions in response to legal events (Aim 5) • resolution of legal events (Aim 6).
For the sake of convenience, throughout the results sections of the present paper, the entire group of participants with a chronic illness or disability will be referred to as ‘participants with a disability’, and ‘disability status’ will refer to whether or not participants are part of this group. The five subgroups of participants with different types of chronic illnesses or disabilities will be referred to as the ‘disability type’ sub-groups.
The study aims were addressed via a range of statistical analyses, including logistic regression, chisquare, Kruskal-Wallis and Mann-Whitney analyses. Details of the analyses conducted are provided in Appendix 2.
Before the results of these analyses are presented here, descriptions are provided of the characteristics of the group of participants with a disability and the characteristics of the five disability type sub-groups.
DESCRIPTION OF PARTICIPANTS WITH A DISABILITY
The demographic characteristics of the 508 participants with a disability were compared with the 1917 participants without a disability (see Table 1). These two groups of participants comprised similar proportions of males and females, and similar proportions of Indigenous and non-Indigenous Australians. However, participants with a disability were significantly more likely than other participants to be older, to be born in an English speaking country, to have lower personal incomes and to have lower levels of education.7
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To examine the extent to which the participants with a disability are representative of the NSW population of people with a chronic illness or disability, the Coumarelos et al. (2006) survey was compared with the Survey of Disability, Ageing and Carers (SDAC) conducted by the Australian Bureau of Statistics (ABS) in 2003 (ABS 2004a; 2004b). The SDAC is the largest survey in Australia measuring disability. In terms of the overall incidence of chronic illness or disability, the percentage of 20.9 per cent (i.e. 508 of 2431 participants) obtained by the Coumarelos et al. (2006) survey is virtually identical to the 20.2 per cent obtained by the SDAC.8
In terms of participants’ demographic characteristics, there were some similarities and some differences between the two surveys. The SDAC disability participants, when compared with other SDAC participants, were more likely to be female, older, born outside Australia or New Zealand, and out of the labour force or unemployed. SDAC disability participants were also more likely to have no post
school qualifications and lower incomes.9 Thus, the SDAC survey was similar to the Coumarelos et al. (2006) survey (see Table 1) in that participants with a disability were older and more disadvantaged on the indicators of income and education compared with other participants. However, despite these similarities, when the SDAC disability participants were directly compared with the Coumarelos et al. (2006) participants with a disability, those from the SDAC were significantly older, less likely to have post-school qualifications, less likely to be out of the workforce and more likely to be employed.10
Given the differences noted above between the Coumarelos et al. (2006) survey and the SDAC, it appears that the group of participants with a disability used in the present analyses may not be entirely representative of the NSW population of people who have a chronic illness or disability.
TABLE 1: DISABILITY STATUS BY DEMOGRAPHIC FACTORS PARTICIPANTS WITH AND PARTICIPANTS WITHOUT A DISABILITY, 2003
DEMOGRAPHIC FACTOR
DISABILITY STATUS
ALL PARTICIPANTS
DISABILITY
NO DISABILITY
NO.
%
NO.
%
NO.
Gender
Female
246
48.4
957
50.1
1203
Male
262
51.6
960
49.9
1222
Total
508
100
1917
100
2425
Age (years) a
15–24
35
6.9
367
19.2
402
25–34
57
11.2
405
21.1
462
35–44
78
15.4
402
21
480
45–54
112
22.1
335
17.5
447
55–64
109
21.5
190
9.9
299
65+
116
22.9
216
11.3
332
Total
507
100
1915
100
2422
Indigenous status
Indigenous
17
3.9
63
3.6
80
Non-Indigenous
419
96.1
1681
96.4
2100
Total
436
100
1744
100
2180
Country of birth a
English speaking
454
89.5
1602
83.7
2056
Non-English speaking
53
10.5
313
16.3
366
Total
507
100
1915
100
2422
Personal income a ($/week)
0–199 200–499
126
26.4
363
20.7
489
219
45.9
598
34.1
817
500–999
97
20.3
590
33.6
687
1000+
35
7.3
205
11.7
240
Total
477
100
1756
100
2233
Educational level a
Didn’t finish/at school
68
13.5
200
10.5
268
Year 10/equivalent
153
30.3
509
26.7
662
Year 12/equivalent
101
20
404
21.2
505
Certificate/diploma
89
17.6
320
16.8
409
University degree
94
18.6
471
24.7
565
Total
505
100
1904
100
2409
a Significant difference, p<0.05.
Notes: n=508 participants with a disability and 1917 participants without a disability. Where the total for a given demographic factor is less than 2425 (i.e. 508 + 1917), data were missing on that factor. Disability status was missing for six participants.
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DESCRIPTION OF DISABILITY TYPE SUB-GROUPS
When participants of the Coumarelos et al. (2006) survey reported a chronic illness or disability, they were asked to specify the type of illnesses or disabilities they had.11 Their responses were recorded into the following seven categories: • mental health problem • visual disability • hearing disability • physical disability • intellectual disability • learning disability • chronic condition.
These seven categories were grouped into five disability type sub-groups for the purposes of the present paper (see Table 2). Due to insufficient numbers, it was not possible to retain intellectual disability and learning disability as disability type subgroups.12 Of the 508 participants with a disability, 503 were used in the analyses that compared disability types.13 As Table 2 shows, 30 participants reported two or more types of chronic illness or disability. The remaining 473 participants with a disability only reported one type, with 43 reporting a mental health problem, 28 reporting a sensory (visual or hearing) disability, 235 reporting a physical (non-sensory) disability, and 167 reporting a chronic condition.
TABLE 2: DISABILITY TYPE PARTICIPANTS WITH A DISABILITY, 2003
DISABILITY TYPE
NO. OF PARTICIPANTS
Mental health problem only a
43
Sensory (visual or hearing) disability only b
28
Physical (non-sensory) disability only c
235
Chronic condition only d
167
Multiple types e
30
Total
503
a Mental health problem includes, but is not limited to, anxiety disorders, psychoses, stress disorders, substance abuse/addiction, personality disorders and depression.
b Sensory disability includes visual disability (i.e. blindness or visual impairment that is not corrected by glasses or contact lenses) and hearing disability (i.e. deafness, hearing impairment and hearing loss).
c Physical disability is a physical impairment that limits the individual’s activities or participation in society. As well as such physical conditions as paraplegia and quadriplegia, it includes loss of limbs and physical conditions that impair movement such as back problems, arthritis and occupational overuse syndrome.
d Chronic conditions are other long-term illnesses or diseases that impair functioning, and include such conditions as diabetes, heart problems and asthma.
e Of these 30 participants, 24 participants reported two disability types, five participants reported three types and one participant reported four types. Of these 30 participants, 23 reported a physical disability, 16 reported a chronic condition, 14 reported a mental health problem, 12 reported a sensory disability and one reported a learning disability.
Notes: n=503 participants with a disability. Disability type was missing for 4 participants with a disability and the participant with an intellectual
disability was excluded from the disability type categorisation.
LIMITATIONS OF PRESENT ANALYSES
The group of participants with a disability used in the present analysis is unlikely to be entirely representative of the population of people who have a chronic illness or disability. Firstly, as already noted, there were some demographic differences between the groups of participants with a disability drawn from the Coumarelos et al. (2006) survey and the SDAC. Secondly, the Coumarelos et al. (2006) survey sampled only six disadvantaged areas of NSW and may not be representative of other areas of NSW. Thirdly, the illnesses and disabilities reported in the Coumarelos et al. (2006) survey may be less severe than those in the population given that some people facing severe restrictions may be unable to easily complete a 21-minute telephone survey.
While the Coumarelos et al. (2006) survey had the advantage of recording the type of chronic illness or disability, it did not assess the severity of the illnesses and disabilities, such as the level of restriction involved in participating in daily activities or in society more generally. As a result, any differences reported below between the five disability type sub-groups could, in part, be due to differences in severity. Furthermore, the low numbers in some of the disability type sub-groups (i.e. the mental health problem, sensory disability and multiple types subgroups) may also have militated against finding significant differences.
As a result of the above limitations, the conclusions presented in this paper should be treated as suggestive rather than definitive. However, given the dearth of empirical data on this issue, the present findings are a starting point for exploring this issue and, it is hoped, will provide a stimulus for more rigorous future investigation.14
EXPERIENCE OF LEGAL EVENTS OF ANY TYPE
Participants with a disability
Coumarelos et al. (2006) reported that participants with a disability were more likely to experience legal events when compared to other participants, with their odds of reporting legal events being 1.7 times higher. Whereas 72.8 per cent (or 370) of the 508 participants with a disability reported legal events, only 68.1 per cent (or 1305) of the 1917 participants without a disability reported legal events (see Figures 1a and 1b).
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FIGURE 1A: NUMBER OF LEGAL EVENTS REPORTED PER PARTICIPANT PARTICIPANTS WITH A DISABILITY, 2003
50
40
30
%
20
10
27.2% (n=138)
20.3% (n=103)
12.2% (n=62)
40.4% (n=205)
0 No event
1 event
Note: n=508 participants with a disability.
2 events
3+ events
Furthermore, 40.4 per cent of the participants with a disability reported at least three events, compared with only 30.9 per cent of other participants.
Given the above finding that participants with a disability were more likely to experience legal events, a Mann-Whitney test was used to examine whether this group were also more likely to report a greater number of events. When compared with other participants who reported experiencing legal events, those with a disability who reported experiencing legal events actually reported a significantly higher number of events on average (see Table 3).15 This finding adds further credence to the conclusion that people with a disability are more likely to experience multiple legal events.
TABLE 3: MEAN AND MEDIAN NUMBER OF LEGAL EVENTS BY DISABILITY STATUS PARTICIPANTS WHO REPORTED AT LEAST ONE LEGAL EVENT, 2003
DISABILITY STATUS
MEAN NO. OF EVENTS
MEDIAN NO. OF EVENTS
NO. OF PARTICIPANTS WITH 1+ EVENTS
Disability
4.1
3
370
No disability
3.2
2
1305
Note: n=1675 participants who reported at least one legal event.
Disability type sub-groups
Given the increased risk of reporting legal events among the group of participants with a disability, a logistic regression analysis was conducted to examine whether incidence of legal events is related to disability type. The regression was based solely on the data for participants with a disability, and compared the five disability type sub-groups on their overall incidence of legal events of any type. Table 4 provides a summary of these regression results.16
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FIGURE 1B: NUMBER OF LEGAL EVENTS REPORTED PER PARTICIPANT PARTICIPANTS WITHOUT A DISABILITY, 2003
50
40
30
%
20
10
31.9% (n=612)
22.8% (n=437)
14.3% (n=275)
30.9% (n=593)
0 No event
1 event
2 events
Note: n=1917 participants without a disability.
3+ events
The regression analysis revealed that disability type was a significant predictor of reporting legal events for participants with a disability. Age and country of birth were also significant predictors in the model, and were independent of the contribution made by disability type. Gender, personal income and educational level were not significant.
Table 4 shows that, compared with the average for all participants with a disability, the odds of reporting legal events were:
TABLE 4: SUMMARY OF STANDARD BINARY LOGISTIC REGRESSION FOR REPORTING LEGAL EVENTS OF ANY TYPE PARTICIPANTS WITH A DISABILITY, 2003
SIGNIFICANT VARIABLES
VARIABLE
COMPARISON
ODDS RATIO a
Disability type b Mental health problem versus
ns
average
Sensory disability versus average
0.3
Physical disability versus average
ns
Chronic condition versus average
1.6
Multiple types versus average
ns
Age (years)
15–24 versus 65+
7.5
25–34 versus 65+
3.9
35–44 versus 65+
5.4
45–54 versus 65+
4.3
55–64 versus 65+
2.3
Country of birth English versus non-English
3.0
speaking
NON-SIGNIFICANT Gender, personal income, educational level VARIABLES
a An odds ratio greater than 1.0 indicates the first category in the comparison had higher odds than the second. An odds ratio less than 1.0 indicates the first category in the comparison had lower odds than the second.
b Each disability type sub-group was compared with the average of all disability type sub-groups.
Notes: n=502 participants with a disability. Disability type was missing for four participants with a disability and data on other demographic variables was missing for another participant with a disability. The participant with an intellectual disability was excluded from the disability type categorisation.
‘ns’ indicates the odds ratio was not statistically significant, that is, the odds for the first category in the comparison were not statistically different from the odds for the second category (even though the overall variable was significant).
• 0.3 times lower for participants with a sensory disability
• 1.6 times higher for participants with a chronic condition.
It can be seen from Table 5 that, whereas 27.2 per cent of all participants with a disability reported no legal events, a higher percentage (53.6%) of those with a sensory disability reported no legal events and a lower percentage (21.6%) of participants with a chronic condition reported no legal events.17
TABLE 5: NUMBER OF LEGAL EVENTS REPORTED PER PARTICIPANT BY DISABILITY TYPE PARTICIPANTS WITH A DISABILITY, 2003
DISABILITY TYPE
NO EVENT
%
1–2 EVENTS
%
3+ EVENTS
%
NO. OF PARTICIPANTS
Mental health
20.9
30.2
48.8
43
problem a
Sensory disability
53.6
28.6
17.9
28
Physical disability
29.4
30.6
40.0
235
Chronic condition
21.6
37.7
40.7
167
Multiple types
26.7
26.7
46.7
30
Total
27.2
32.6
40.2
503
a While the raw percentage reporting no legal events was lower than average for the mental health problem sub-group, there was no significant difference. It is possible that other demographic factors were responsible for the difference in raw percentages or that the small number of participants in the mental health sub-group militated against finding a significant difference.
Notes: n=503 participants with a disability. Disability type was missing for four participants with a disability. The participant with an intellectual disability
was excluded from the disability type categorisation.
With regard to age, those participants with a disability aged under 65 years had higher odds of reporting legal events than those aged 65 years or over (see Table 4). With regard to country of birth, participants with a disability who were born in an English speaking country had higher odds of reporting legal events than those born in a non-English speaking country. Both of these results for participants with a disability are similar to the results reported by Coumarelos et al. (2006) for the overall sample (which also included participants without a disability).
A Kruskal-Wallis test was used to examine the actual number of legal events reported by participants in each disability type sub-group who reported at least one legal event. The results were not significant, indicating that the disability type sub-groups report experiencing a similar number of legal events when they do report events.18 Thus, the higher number of legal events reported by the group of participants with a disability appears to be reflected similarly across the five disability type sub-groups.
EXPERIENCE OF DIFFERENT TYPES OF LEGAL EVENTS
Participants with a disability
Based on regression analyses controlling for relevant demographic factors, Coumarelos et al. (2006) reported that, compared with other participants, those with a disability had increased odds of reporting nine of the 10 most frequent types of legal events.
TABLE 6: INCIDENCE OF LEGAL EVENTS BY DISABILITY STATUS AND TYPE OF LEGAL EVENT PARTICIPANTS WITH AND PARTICIPANTS WITHOUT A DISABILITY, 2003
AREA OF LAW LEGAL EVENT GROUP
DISABILITY STATUS
DISABILITY (N=508) a
NO DISABILITY (N=1917) a
% OF PARTICIPANTS REPORTING 1+ EVENTS
Civil
Accident/injury b
18.9
19.2
Business
5.7
4.9
Consumer
26.6
20.8
Credit/debt
14.4
11.4
Education
8.3
7.1
Employment
11.0
12.3
Government
24.8
18.2
Health c
10.4
1.3
Housing
24.2
22.2
Human rights
10.2
4.6
Wills/estates d
19.3
13.5
Total civil
66.7
61.3
Criminal
Domestic violence
5.1
3.6
General crime
30.5
25.6
Traffic offences e
3.6
3.1
Total crime
34.3
29.1
Family
Family
10.0
8.0
Unclassified f
1.2
0.3
All event types
72.8
68.1
a n=508 participants with a disability and 1917 participants without a disability. Given their life circumstances, some participants did not have the potential to experience some types of legal events. Specifically, only participants who:
• owned a small business could potentially experience business events (disability n=93, no disability n=469)
• were full- or part-time students, or were responsible for a student, could potentially experience education events (disability n=168, no disability n=904)
• were employed full- or part-time could potentially experience employment events (disability n=212, no disability n=1201)
• had a disability, had been institutionalised in a psychiatric ward or had cared for an elderly or disabled person could potentially experience health legal events (disability=508, no disability=256).
b The raw percentages of accident/injury events were virtually identical for the group of participants with a disability and the group without a disability. However, this finding is largely due to accident/injury events being less prevalent amongst older participants (see Coumarelos et al. 2006, p. 83). The participants with a disability were significantly older than the other participants. When appropriate adjustments are made for this age difference (e.g. in the regression analysis) between the two groups, it is clear that disability increases the likelihood of experiencing accident/injury events.
c Information on health legal events was missing for two participants with a disability.
d Information on wills/estates events was missing for one participant without a disability.
e Information on traffic offence events was missing for one participant with disability.
f ‘Unclassified’ legal events consist of events that were unclearly described by participants.
Note: Participants sometimes reported multiple legal events (within or across legal event groups).
9
They had increased odds of reporting: • accident/injury events (1.4 times higher) • consumer events (2.1 times higher) • credit/debt events (1.7 times higher) • education events (1.8 times higher) • employment events (1.5 times higher) • government events (2.0 times higher) • housing events (1.6 times higher) • general crime events (1.7 times higher) • family events (1.7 times higher).19
Table 6 presents the percentage of participants who reported experiencing one or more legal events broken down by disability status and type of legal event.
Disability type sub-groups
The present study examined whether the incidence of different types of legal events among participants with a disability depended on disability type. According to the chi-square results, there were no
significant differences among the disability type subgroups in their reported incidence for 14 of the 15 legal event groups.20
The chi-square result for health legal events was significant, and suggested that the sub-group with a mental health problem had a significantly higher incidence of health legal events compared with the other disability type sub-groups.21 Whereas 23.3 per cent of participants with a mental health problem reported experiencing health legal events, under 10 per cent of participants with a sensory disability, physical disability or chronic condition reported experiencing health legal events (see Table 7).
However, further analysis suggested that the significant result for health legal events was driven by the health legal events that are specific to mental health problems. Two of the health legal events — involuntary psychiatric hospitalisation (Question 42A) and other mental health care issue (Question 42B) — were only asked of participants with a mental
TABLE 7: INCIDENCE OF LEGAL EVENTS BY DISABILITY TYPE AND TYPE OF LEGAL EVENT PARTICIPANTS WITH A DISABILITY, 2003
AREA OF LAW
LEGAL EVENT GROUP
MENTAL HEALTH PROBLEM (N=43) a
SENSORY DISABILITY
(N=28) a
DISABILITY TYPE
PHYSICAL DISABILITY
(N=235) a
CHRONIC CONDITION
(N=167) a
MULTIPLE TYPES (N=30) a
% OF PARTICIPANTS REPORTING 1+ EVENTS
Civil
Accident/injury
16.3
10.7
22.1
16.8
16.7
Business
7.0
3.6
7.2
4.8
0.0
Consumer
34.9
14.3
25.1
25.1
40.0
Credit/debt
16.3
7.1
14.5
12.6
26.7
Education
11.6
3.6
7.2
9.0
6.7
Employment
2.3
7.1
12.3
12.6
6.7
Government
30.2
14.3
21.3
27.5
33.3
Health b
23.3
3.7
8.5
9.0
20.0
Housing
23.3
32.1
18.7
28.1
33.3
Human rights
9.3
14.3
9.4
7.8
23.3
Wills/estates
27.9
10.7
17.9
21.0
13.3
Total civil
72.1
42.9
64.7
71.3
70.0
Criminal
Domestic violence
9.3
0.0
4.7
4.8
10.0
General crime
34.9
10.7
29.4
32.9
36.7
Traffic offences c
2.3
0.0
3.0
5.4
3.3
Total crime
44.2
10.7
31.9
37.7
40.0
Family Unclassified d
Family
11.6
3.6
10.2
9.6
13.3
0.0
3.6
0.9
1.2
3.3
All event types
79.1
46.4
70.6
78.4
73.3
a n=503 participants with a disability. Disability type was missing for four participants and the participant with an intellectual disability was excluded from the disability type categorisation. Given their life circumstances, some participants did not have the potential to experience some types of legal events. Specifically, only participants who:
• owned a small business could potentially experience business events (mental health problem n=7, sensory disability n=8, physical disability n=81, chronic condition n=3, multiple types n=5)
• were full- or part-time students, or were responsible for a student, could potentially experience education events (mental health problem n=15, sensory disability n=5, physical disability n=41, chronic condition n=59, multiple types n=6)
• were employed full- or part-time at some time during the reference period could potentially experience employment events (mental health problem n=15, sensory disability n=9, physical disability n=98, chronic condition n=77, multiple types n=10).
b Information on health legal events was missing for one participant with a sensory disability and one participant with a physical disability.
c Information on traffic offence events was missing for one participant with a physical disability.
d ‘Unclassified’ legal events consist of events that were unclearly described by participants.
Note: Participants sometimes reported multiple legal events (within or across legal event groups).
10
The legal needs of people with different types of chronic illness or disability
Christine Coumarelos and Zhigang Wei
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).
1
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
2
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 housingrelated 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
3
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 nonlegal 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
4
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.
NSW LEGAL NEEDS SURVEY
As noted above, in their monograph entitled Justice made to measure: NSW Legal Needs Survey in disadvantaged areas, Coumarelos et al. (2006) reported on a legal needs survey conducted in 2003 in six local government areas of NSW. The survey was administered via telephone interviews to 2431 residents aged 15 years or over. The six areas covered geographically diverse areas of NSW, had high risk scores for socioeconomic disadvantage, and comprised urban, rural and remote areas.4
The survey measured 101 different ‘legal events’, that is, events that have the potential for legal resolution (see Appendix 1).5 These legal events were categorised into the following 15 groups:
• 11 groups of civil law events — accident/injury, business, consumer, credit/debt, education, employment, government, health, housing, human rights and wills/estates
• three groups of criminal law events — domestic violence, general crime and traffic offences
• one group of family law events.
Of the 2431 participants surveyed, 508 or 20.9 per cent reported that they had one or more chronic illnesses or disabilities.6 Coumarelos et al. (2006) found that these 508 participants with a chronic illness or disability, when compared with other participants, had: • increased vulnerability to a wide range of legal
events • similar rates of seeking help for their legal events • reduced rates of resolving their legal events.
Given their high incidence rate and low resolution rate, Coumarelos et al. (2006) argued that meeting the legal needs of this group should be a top priority in legal service provision.
AIMS OF THE PRESENT STUDY
The present study aimed to further elucidate the nature of the access to justice and legal needs of people with a chronic illness or disability by reporting on some additional analyses of the data from the Coumarelos et al. (2006) survey.
Six specific aims were identified for this present study. The first two aims involved further comparisons between the group of participants with a chronic illness or disability and the group without a chronic illness or disability. More specifically, the first two aims investigated whether participants with a chronic illness or disability differed from other participants in terms of: • their experience of multiple legal events (Aim 1) • the type of adviser they first consulted in
response to legal events (Aim 2).
The present study also involved comparisons between participants with different types of chronic illness or disability. Coumarelos et al. (2006) reported on participants with a chronic illness or disability as a single group, and did not examine whether participants with certain types of chronic illness or disability are even more likely than others to experience legal problems and to require
assistance to resolve those problems. The present study investigated whether people with different types of chronic illness or disability differ in the legal problems they experience and the outcomes they achieve. For comparison purposes, the participants with a chronic illness or disability were divided into five sub-groups based on the type of chronic illness or disability. More specifically, the last four aims of the present study were to examine whether the five sub-groups of chronic illness or disability differed in terms of their: • experience of legal events of any type (Aim 3) • experience of different types of legal events (Aim 4) • actions in response to legal events (Aim 5) • resolution of legal events (Aim 6).
For the sake of convenience, throughout the results sections of the present paper, the entire group of participants with a chronic illness or disability will be referred to as ‘participants with a disability’, and ‘disability status’ will refer to whether or not participants are part of this group. The five subgroups of participants with different types of chronic illnesses or disabilities will be referred to as the ‘disability type’ sub-groups.
The study aims were addressed via a range of statistical analyses, including logistic regression, chisquare, Kruskal-Wallis and Mann-Whitney analyses. Details of the analyses conducted are provided in Appendix 2.
Before the results of these analyses are presented here, descriptions are provided of the characteristics of the group of participants with a disability and the characteristics of the five disability type sub-groups.
DESCRIPTION OF PARTICIPANTS WITH A DISABILITY
The demographic characteristics of the 508 participants with a disability were compared with the 1917 participants without a disability (see Table 1). These two groups of participants comprised similar proportions of males and females, and similar proportions of Indigenous and non-Indigenous Australians. However, participants with a disability were significantly more likely than other participants to be older, to be born in an English speaking country, to have lower personal incomes and to have lower levels of education.7
5
To examine the extent to which the participants with a disability are representative of the NSW population of people with a chronic illness or disability, the Coumarelos et al. (2006) survey was compared with the Survey of Disability, Ageing and Carers (SDAC) conducted by the Australian Bureau of Statistics (ABS) in 2003 (ABS 2004a; 2004b). The SDAC is the largest survey in Australia measuring disability. In terms of the overall incidence of chronic illness or disability, the percentage of 20.9 per cent (i.e. 508 of 2431 participants) obtained by the Coumarelos et al. (2006) survey is virtually identical to the 20.2 per cent obtained by the SDAC.8
In terms of participants’ demographic characteristics, there were some similarities and some differences between the two surveys. The SDAC disability participants, when compared with other SDAC participants, were more likely to be female, older, born outside Australia or New Zealand, and out of the labour force or unemployed. SDAC disability participants were also more likely to have no post
school qualifications and lower incomes.9 Thus, the SDAC survey was similar to the Coumarelos et al. (2006) survey (see Table 1) in that participants with a disability were older and more disadvantaged on the indicators of income and education compared with other participants. However, despite these similarities, when the SDAC disability participants were directly compared with the Coumarelos et al. (2006) participants with a disability, those from the SDAC were significantly older, less likely to have post-school qualifications, less likely to be out of the workforce and more likely to be employed.10
Given the differences noted above between the Coumarelos et al. (2006) survey and the SDAC, it appears that the group of participants with a disability used in the present analyses may not be entirely representative of the NSW population of people who have a chronic illness or disability.
TABLE 1: DISABILITY STATUS BY DEMOGRAPHIC FACTORS PARTICIPANTS WITH AND PARTICIPANTS WITHOUT A DISABILITY, 2003
DEMOGRAPHIC FACTOR
DISABILITY STATUS
ALL PARTICIPANTS
DISABILITY
NO DISABILITY
NO.
%
NO.
%
NO.
Gender
Female
246
48.4
957
50.1
1203
Male
262
51.6
960
49.9
1222
Total
508
100
1917
100
2425
Age (years) a
15–24
35
6.9
367
19.2
402
25–34
57
11.2
405
21.1
462
35–44
78
15.4
402
21
480
45–54
112
22.1
335
17.5
447
55–64
109
21.5
190
9.9
299
65+
116
22.9
216
11.3
332
Total
507
100
1915
100
2422
Indigenous status
Indigenous
17
3.9
63
3.6
80
Non-Indigenous
419
96.1
1681
96.4
2100
Total
436
100
1744
100
2180
Country of birth a
English speaking
454
89.5
1602
83.7
2056
Non-English speaking
53
10.5
313
16.3
366
Total
507
100
1915
100
2422
Personal income a ($/week)
0–199 200–499
126
26.4
363
20.7
489
219
45.9
598
34.1
817
500–999
97
20.3
590
33.6
687
1000+
35
7.3
205
11.7
240
Total
477
100
1756
100
2233
Educational level a
Didn’t finish/at school
68
13.5
200
10.5
268
Year 10/equivalent
153
30.3
509
26.7
662
Year 12/equivalent
101
20
404
21.2
505
Certificate/diploma
89
17.6
320
16.8
409
University degree
94
18.6
471
24.7
565
Total
505
100
1904
100
2409
a Significant difference, p<0.05.
Notes: n=508 participants with a disability and 1917 participants without a disability. Where the total for a given demographic factor is less than 2425 (i.e. 508 + 1917), data were missing on that factor. Disability status was missing for six participants.
6
DESCRIPTION OF DISABILITY TYPE SUB-GROUPS
When participants of the Coumarelos et al. (2006) survey reported a chronic illness or disability, they were asked to specify the type of illnesses or disabilities they had.11 Their responses were recorded into the following seven categories: • mental health problem • visual disability • hearing disability • physical disability • intellectual disability • learning disability • chronic condition.
These seven categories were grouped into five disability type sub-groups for the purposes of the present paper (see Table 2). Due to insufficient numbers, it was not possible to retain intellectual disability and learning disability as disability type subgroups.12 Of the 508 participants with a disability, 503 were used in the analyses that compared disability types.13 As Table 2 shows, 30 participants reported two or more types of chronic illness or disability. The remaining 473 participants with a disability only reported one type, with 43 reporting a mental health problem, 28 reporting a sensory (visual or hearing) disability, 235 reporting a physical (non-sensory) disability, and 167 reporting a chronic condition.
TABLE 2: DISABILITY TYPE PARTICIPANTS WITH A DISABILITY, 2003
DISABILITY TYPE
NO. OF PARTICIPANTS
Mental health problem only a
43
Sensory (visual or hearing) disability only b
28
Physical (non-sensory) disability only c
235
Chronic condition only d
167
Multiple types e
30
Total
503
a Mental health problem includes, but is not limited to, anxiety disorders, psychoses, stress disorders, substance abuse/addiction, personality disorders and depression.
b Sensory disability includes visual disability (i.e. blindness or visual impairment that is not corrected by glasses or contact lenses) and hearing disability (i.e. deafness, hearing impairment and hearing loss).
c Physical disability is a physical impairment that limits the individual’s activities or participation in society. As well as such physical conditions as paraplegia and quadriplegia, it includes loss of limbs and physical conditions that impair movement such as back problems, arthritis and occupational overuse syndrome.
d Chronic conditions are other long-term illnesses or diseases that impair functioning, and include such conditions as diabetes, heart problems and asthma.
e Of these 30 participants, 24 participants reported two disability types, five participants reported three types and one participant reported four types. Of these 30 participants, 23 reported a physical disability, 16 reported a chronic condition, 14 reported a mental health problem, 12 reported a sensory disability and one reported a learning disability.
Notes: n=503 participants with a disability. Disability type was missing for 4 participants with a disability and the participant with an intellectual
disability was excluded from the disability type categorisation.
LIMITATIONS OF PRESENT ANALYSES
The group of participants with a disability used in the present analysis is unlikely to be entirely representative of the population of people who have a chronic illness or disability. Firstly, as already noted, there were some demographic differences between the groups of participants with a disability drawn from the Coumarelos et al. (2006) survey and the SDAC. Secondly, the Coumarelos et al. (2006) survey sampled only six disadvantaged areas of NSW and may not be representative of other areas of NSW. Thirdly, the illnesses and disabilities reported in the Coumarelos et al. (2006) survey may be less severe than those in the population given that some people facing severe restrictions may be unable to easily complete a 21-minute telephone survey.
While the Coumarelos et al. (2006) survey had the advantage of recording the type of chronic illness or disability, it did not assess the severity of the illnesses and disabilities, such as the level of restriction involved in participating in daily activities or in society more generally. As a result, any differences reported below between the five disability type sub-groups could, in part, be due to differences in severity. Furthermore, the low numbers in some of the disability type sub-groups (i.e. the mental health problem, sensory disability and multiple types subgroups) may also have militated against finding significant differences.
As a result of the above limitations, the conclusions presented in this paper should be treated as suggestive rather than definitive. However, given the dearth of empirical data on this issue, the present findings are a starting point for exploring this issue and, it is hoped, will provide a stimulus for more rigorous future investigation.14
EXPERIENCE OF LEGAL EVENTS OF ANY TYPE
Participants with a disability
Coumarelos et al. (2006) reported that participants with a disability were more likely to experience legal events when compared to other participants, with their odds of reporting legal events being 1.7 times higher. Whereas 72.8 per cent (or 370) of the 508 participants with a disability reported legal events, only 68.1 per cent (or 1305) of the 1917 participants without a disability reported legal events (see Figures 1a and 1b).
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FIGURE 1A: NUMBER OF LEGAL EVENTS REPORTED PER PARTICIPANT PARTICIPANTS WITH A DISABILITY, 2003
50
40
30
%
20
10
27.2% (n=138)
20.3% (n=103)
12.2% (n=62)
40.4% (n=205)
0 No event
1 event
Note: n=508 participants with a disability.
2 events
3+ events
Furthermore, 40.4 per cent of the participants with a disability reported at least three events, compared with only 30.9 per cent of other participants.
Given the above finding that participants with a disability were more likely to experience legal events, a Mann-Whitney test was used to examine whether this group were also more likely to report a greater number of events. When compared with other participants who reported experiencing legal events, those with a disability who reported experiencing legal events actually reported a significantly higher number of events on average (see Table 3).15 This finding adds further credence to the conclusion that people with a disability are more likely to experience multiple legal events.
TABLE 3: MEAN AND MEDIAN NUMBER OF LEGAL EVENTS BY DISABILITY STATUS PARTICIPANTS WHO REPORTED AT LEAST ONE LEGAL EVENT, 2003
DISABILITY STATUS
MEAN NO. OF EVENTS
MEDIAN NO. OF EVENTS
NO. OF PARTICIPANTS WITH 1+ EVENTS
Disability
4.1
3
370
No disability
3.2
2
1305
Note: n=1675 participants who reported at least one legal event.
Disability type sub-groups
Given the increased risk of reporting legal events among the group of participants with a disability, a logistic regression analysis was conducted to examine whether incidence of legal events is related to disability type. The regression was based solely on the data for participants with a disability, and compared the five disability type sub-groups on their overall incidence of legal events of any type. Table 4 provides a summary of these regression results.16
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FIGURE 1B: NUMBER OF LEGAL EVENTS REPORTED PER PARTICIPANT PARTICIPANTS WITHOUT A DISABILITY, 2003
50
40
30
%
20
10
31.9% (n=612)
22.8% (n=437)
14.3% (n=275)
30.9% (n=593)
0 No event
1 event
2 events
Note: n=1917 participants without a disability.
3+ events
The regression analysis revealed that disability type was a significant predictor of reporting legal events for participants with a disability. Age and country of birth were also significant predictors in the model, and were independent of the contribution made by disability type. Gender, personal income and educational level were not significant.
Table 4 shows that, compared with the average for all participants with a disability, the odds of reporting legal events were:
TABLE 4: SUMMARY OF STANDARD BINARY LOGISTIC REGRESSION FOR REPORTING LEGAL EVENTS OF ANY TYPE PARTICIPANTS WITH A DISABILITY, 2003
SIGNIFICANT VARIABLES
VARIABLE
COMPARISON
ODDS RATIO a
Disability type b Mental health problem versus
ns
average
Sensory disability versus average
0.3
Physical disability versus average
ns
Chronic condition versus average
1.6
Multiple types versus average
ns
Age (years)
15–24 versus 65+
7.5
25–34 versus 65+
3.9
35–44 versus 65+
5.4
45–54 versus 65+
4.3
55–64 versus 65+
2.3
Country of birth English versus non-English
3.0
speaking
NON-SIGNIFICANT Gender, personal income, educational level VARIABLES
a An odds ratio greater than 1.0 indicates the first category in the comparison had higher odds than the second. An odds ratio less than 1.0 indicates the first category in the comparison had lower odds than the second.
b Each disability type sub-group was compared with the average of all disability type sub-groups.
Notes: n=502 participants with a disability. Disability type was missing for four participants with a disability and data on other demographic variables was missing for another participant with a disability. The participant with an intellectual disability was excluded from the disability type categorisation.
‘ns’ indicates the odds ratio was not statistically significant, that is, the odds for the first category in the comparison were not statistically different from the odds for the second category (even though the overall variable was significant).
• 0.3 times lower for participants with a sensory disability
• 1.6 times higher for participants with a chronic condition.
It can be seen from Table 5 that, whereas 27.2 per cent of all participants with a disability reported no legal events, a higher percentage (53.6%) of those with a sensory disability reported no legal events and a lower percentage (21.6%) of participants with a chronic condition reported no legal events.17
TABLE 5: NUMBER OF LEGAL EVENTS REPORTED PER PARTICIPANT BY DISABILITY TYPE PARTICIPANTS WITH A DISABILITY, 2003
DISABILITY TYPE
NO EVENT
%
1–2 EVENTS
%
3+ EVENTS
%
NO. OF PARTICIPANTS
Mental health
20.9
30.2
48.8
43
problem a
Sensory disability
53.6
28.6
17.9
28
Physical disability
29.4
30.6
40.0
235
Chronic condition
21.6
37.7
40.7
167
Multiple types
26.7
26.7
46.7
30
Total
27.2
32.6
40.2
503
a While the raw percentage reporting no legal events was lower than average for the mental health problem sub-group, there was no significant difference. It is possible that other demographic factors were responsible for the difference in raw percentages or that the small number of participants in the mental health sub-group militated against finding a significant difference.
Notes: n=503 participants with a disability. Disability type was missing for four participants with a disability. The participant with an intellectual disability
was excluded from the disability type categorisation.
With regard to age, those participants with a disability aged under 65 years had higher odds of reporting legal events than those aged 65 years or over (see Table 4). With regard to country of birth, participants with a disability who were born in an English speaking country had higher odds of reporting legal events than those born in a non-English speaking country. Both of these results for participants with a disability are similar to the results reported by Coumarelos et al. (2006) for the overall sample (which also included participants without a disability).
A Kruskal-Wallis test was used to examine the actual number of legal events reported by participants in each disability type sub-group who reported at least one legal event. The results were not significant, indicating that the disability type sub-groups report experiencing a similar number of legal events when they do report events.18 Thus, the higher number of legal events reported by the group of participants with a disability appears to be reflected similarly across the five disability type sub-groups.
EXPERIENCE OF DIFFERENT TYPES OF LEGAL EVENTS
Participants with a disability
Based on regression analyses controlling for relevant demographic factors, Coumarelos et al. (2006) reported that, compared with other participants, those with a disability had increased odds of reporting nine of the 10 most frequent types of legal events.
TABLE 6: INCIDENCE OF LEGAL EVENTS BY DISABILITY STATUS AND TYPE OF LEGAL EVENT PARTICIPANTS WITH AND PARTICIPANTS WITHOUT A DISABILITY, 2003
AREA OF LAW LEGAL EVENT GROUP
DISABILITY STATUS
DISABILITY (N=508) a
NO DISABILITY (N=1917) a
% OF PARTICIPANTS REPORTING 1+ EVENTS
Civil
Accident/injury b
18.9
19.2
Business
5.7
4.9
Consumer
26.6
20.8
Credit/debt
14.4
11.4
Education
8.3
7.1
Employment
11.0
12.3
Government
24.8
18.2
Health c
10.4
1.3
Housing
24.2
22.2
Human rights
10.2
4.6
Wills/estates d
19.3
13.5
Total civil
66.7
61.3
Criminal
Domestic violence
5.1
3.6
General crime
30.5
25.6
Traffic offences e
3.6
3.1
Total crime
34.3
29.1
Family
Family
10.0
8.0
Unclassified f
1.2
0.3
All event types
72.8
68.1
a n=508 participants with a disability and 1917 participants without a disability. Given their life circumstances, some participants did not have the potential to experience some types of legal events. Specifically, only participants who:
• owned a small business could potentially experience business events (disability n=93, no disability n=469)
• were full- or part-time students, or were responsible for a student, could potentially experience education events (disability n=168, no disability n=904)
• were employed full- or part-time could potentially experience employment events (disability n=212, no disability n=1201)
• had a disability, had been institutionalised in a psychiatric ward or had cared for an elderly or disabled person could potentially experience health legal events (disability=508, no disability=256).
b The raw percentages of accident/injury events were virtually identical for the group of participants with a disability and the group without a disability. However, this finding is largely due to accident/injury events being less prevalent amongst older participants (see Coumarelos et al. 2006, p. 83). The participants with a disability were significantly older than the other participants. When appropriate adjustments are made for this age difference (e.g. in the regression analysis) between the two groups, it is clear that disability increases the likelihood of experiencing accident/injury events.
c Information on health legal events was missing for two participants with a disability.
d Information on wills/estates events was missing for one participant without a disability.
e Information on traffic offence events was missing for one participant with disability.
f ‘Unclassified’ legal events consist of events that were unclearly described by participants.
Note: Participants sometimes reported multiple legal events (within or across legal event groups).
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They had increased odds of reporting: • accident/injury events (1.4 times higher) • consumer events (2.1 times higher) • credit/debt events (1.7 times higher) • education events (1.8 times higher) • employment events (1.5 times higher) • government events (2.0 times higher) • housing events (1.6 times higher) • general crime events (1.7 times higher) • family events (1.7 times higher).19
Table 6 presents the percentage of participants who reported experiencing one or more legal events broken down by disability status and type of legal event.
Disability type sub-groups
The present study examined whether the incidence of different types of legal events among participants with a disability depended on disability type. According to the chi-square results, there were no
significant differences among the disability type subgroups in their reported incidence for 14 of the 15 legal event groups.20
The chi-square result for health legal events was significant, and suggested that the sub-group with a mental health problem had a significantly higher incidence of health legal events compared with the other disability type sub-groups.21 Whereas 23.3 per cent of participants with a mental health problem reported experiencing health legal events, under 10 per cent of participants with a sensory disability, physical disability or chronic condition reported experiencing health legal events (see Table 7).
However, further analysis suggested that the significant result for health legal events was driven by the health legal events that are specific to mental health problems. Two of the health legal events — involuntary psychiatric hospitalisation (Question 42A) and other mental health care issue (Question 42B) — were only asked of participants with a mental
TABLE 7: INCIDENCE OF LEGAL EVENTS BY DISABILITY TYPE AND TYPE OF LEGAL EVENT PARTICIPANTS WITH A DISABILITY, 2003
AREA OF LAW
LEGAL EVENT GROUP
MENTAL HEALTH PROBLEM (N=43) a
SENSORY DISABILITY
(N=28) a
DISABILITY TYPE
PHYSICAL DISABILITY
(N=235) a
CHRONIC CONDITION
(N=167) a
MULTIPLE TYPES (N=30) a
% OF PARTICIPANTS REPORTING 1+ EVENTS
Civil
Accident/injury
16.3
10.7
22.1
16.8
16.7
Business
7.0
3.6
7.2
4.8
0.0
Consumer
34.9
14.3
25.1
25.1
40.0
Credit/debt
16.3
7.1
14.5
12.6
26.7
Education
11.6
3.6
7.2
9.0
6.7
Employment
2.3
7.1
12.3
12.6
6.7
Government
30.2
14.3
21.3
27.5
33.3
Health b
23.3
3.7
8.5
9.0
20.0
Housing
23.3
32.1
18.7
28.1
33.3
Human rights
9.3
14.3
9.4
7.8
23.3
Wills/estates
27.9
10.7
17.9
21.0
13.3
Total civil
72.1
42.9
64.7
71.3
70.0
Criminal
Domestic violence
9.3
0.0
4.7
4.8
10.0
General crime
34.9
10.7
29.4
32.9
36.7
Traffic offences c
2.3
0.0
3.0
5.4
3.3
Total crime
44.2
10.7
31.9
37.7
40.0
Family Unclassified d
Family
11.6
3.6
10.2
9.6
13.3
0.0
3.6
0.9
1.2
3.3
All event types
79.1
46.4
70.6
78.4
73.3
a n=503 participants with a disability. Disability type was missing for four participants and the participant with an intellectual disability was excluded from the disability type categorisation. Given their life circumstances, some participants did not have the potential to experience some types of legal events. Specifically, only participants who:
• owned a small business could potentially experience business events (mental health problem n=7, sensory disability n=8, physical disability n=81, chronic condition n=3, multiple types n=5)
• were full- or part-time students, or were responsible for a student, could potentially experience education events (mental health problem n=15, sensory disability n=5, physical disability n=41, chronic condition n=59, multiple types n=6)
• were employed full- or part-time at some time during the reference period could potentially experience employment events (mental health problem n=15, sensory disability n=9, physical disability n=98, chronic condition n=77, multiple types n=10).
b Information on health legal events was missing for one participant with a sensory disability and one participant with a physical disability.
c Information on traffic offence events was missing for one participant with a physical disability.
d ‘Unclassified’ legal events consist of events that were unclearly described by participants.
Note: Participants sometimes reported multiple legal events (within or across legal event groups).
10