Background to the research

1.1 As part of its review of the Disability Services Act 1993 (NSW) (the DSA) and the Community Services (Complaints, Appeals and Monitoring) Act 1993 (NSW) (CAMA), the New South Wales Law Reform Commission (the “Law Reform Commission”) commissioned Juliet London Research and Consultancy to conduct focus groups and in-depth interviews with people with disabilities to consider issues raised in the review.

1.2 The research took the form of nine focus groups and 23 in-depth interviews with people with various disabilities and levels of support needs (and a small number of carers). Research was conducted during November 1998 throughout the Sydney region, in the Illawarra and around the Broken Hill area. Included in the sample were fifteen people from non-English speaking backgrounds and five Aboriginal people.

Key findings of the research

1.3 The DSA is perceived to have been a useful and positive step in the integration into the community of people with disabilities, resulting in a better range of services and enabling greater participation in the community.

1.4 However, many people with disabilities were concerned about the inadequate funding for disability services. Of specific concern was the lack of funding for new services.

1.5 It was thought that there was scope to increase the role of people with disabilities in the management of disability services and in terms of determining how disability funding should be spent.

1.6 Another issue raised was the extent to which the DSA forces people with disabilities to integrate into the community. It was suggested that they should also be given the option of spending time with other people with disabilities, if they so wished.

1.7 Awareness of CAMA, the Community Visitor Scheme and the Community Services Commission was very low. Thus, it appears that there is scope for an awareness-raising exercise for this legislation and the organisations it establishes.

1.8 Even though most people with disabilities did have an understanding about how they should go about making a complaint about a disability service, some said they were reluctant to make complaints for fear of loss of service or because of a perception that the process is long-winded.

1.9 People with disabilities continue to face discrimination and negative attitudes. Whilst many people believe that the DSA works well in terms of “pushing” people out into the community, there is concern that the general community is not yet exerting a commensurate “pull”.

INTRODUCTION

Background to the research

1.10 As part of a wider review of the DSA and CAMA, the Law Reform Commission commissioned Juliet London Research and Consultancy to conduct focus groups and in-depth interviews with people with disabilities to consider issues raised in the review.

1.11 The objectives for the research were to ascertain:

• awareness of the DSA and CAMA;
• impact of the DSA and CAMA;
• whether services are being used; and
• needs that could be addressed by revised legislation in this area.

1.12 This research project has primarily focused on those areas addressed by the DSA (namely accommodation, community support and access, respite and recreation) and CAMA (that is, community services funded by the State).

1.13 Employment services for people with disabilities are primarily the responsibility of the Federal Government, and thus have not been included in this review.

Methodology and sample

1.14 The research was qualitative in nature and took the form of focus groups comprising between three and six people and one-on-one in-depth interviews with people with disabilities (and a small number of carers).

1.15 Participants were recruited through a variety of sources including:

• contact with services, particularly employment services (which were less likely to be concerned that the research would evaluate their service, since they are covered by the Commonwealth and not the NSW DSA);
• specialist market research recruitment agencies; and
• personal contacts.

1.17 Research was conducted during November 1998 in locations throughout the Sydney region, in the Illawarra region and around the Broken Hill area.

1.18 The sample included people with a variety of disabilities and with various levels of support needs.

1.19 Included in the sample were fifteen people from non-English speaking backgrounds (NESB) (including people from Italy, South America, the former Yugoslavia and China) and five Aboriginal people.

1.20 The sample for the research was as follows:

1.21 The people who took part in the research were using a wide variety of services.

1.22 Accommodation support services were mainly accessed by people with intellectual or physical disabilities. Services currently and previously used included:

• residential services, that is, larger scale supported accommodation;
• group homes, that is, with smaller numbers of people with similar disabilities living together; and
• independent living support, that is, providing the training and assistance to support people living independently.

1.24 All those interviewed with a physical disability were using Home and Community Care (HACC) services, which provided them with help with personal daily living tasks.

1.25 People across all disability types had accessed community support services, and particularly advocacy, self-help and information and referral services. Some had used recreation and case management services.

1.26 A small number of younger people with an intellectual disability had made use of the recently introduced post-school options program, which provides support from school to adult community living.

1.27 Centre-based respite care had mainly been used by participants with an intellectual disability, though some of those with acquired brain injury had also accessed respite services.

GENERAL FINDINGS

1.28 Before turning to the specific findings of this research in relation to the DSA and CAMA, it is useful to establish the context for each Act.

1.29 Thus, in this section, some general findings about relevant disability issues are reported.

Disability type

Differences between disability types

1.30 It is always important to distinguish between the various types of disability. While there may be many practical, historical and even political reasons for placing the disability types together, in reality the needs of people with a disability are often very different.

1.31 For example, the support needs of a person with an intellectual disability are likely to differ from those of a person with a physical disability. In fact, they probably have as much in common with one another as they do with people who have no identified disability. The same applies to people with acquired brain injury, psychiatric illness, sensory disability, or any other type of disability.

1.32 However, there is a view, sometimes referred to as the “social construct” of disability, in which it is argued that people with disabilities share great similarities, because of the way society is structured. Impairments bring about experiences that are exclusive to people with disabilities, such as institutionalisation and discrimination. Having suffered the same experiences as a group, people with disabilities can be seen as having shared emotional and social experiences. In this construct, the mutual experiences contribute to the development of a sub-culture, a disability culture.

Differences within types of disability

1.33 Not only are there differences between the disabilities, but also within them. For example, the needs of a person with a particular physical disability, say paraplegia, may be completely different from a person with another type of physical disability, for example, cerebral palsy.

Congenital and acquired disabilities

1.34 There are also differences between people who have congenital and acquired disabilities.

1.35 For example, people who have a congenital and progressive physical disability often perceive those with an acquired physical disability as having more of a chance of gaining access to rehabilitative services. They believe there is an expectation on the part of services that people with an acquired disability can recover some of their previous physical ability and that there is more eagerness to take on these clients because they often have some form of financial compensation to pay for the necessary services.

Dual disability

1.36 People who have more than one disability often have to deal with an extra set of barriers and limitations. Disability services often focus on just one disability type. Access to services by people with a dual diagnosis may be hampered because their additional disability puts them outside the defined target for a particular service.

Support needs

1.37 Even people with the same type of disability may show significant differences in terms of their support needs, depending upon their level of impairment.

1.38 Thus, whilst some people with an intellectual disability may be able to live independently in the community with minimal or no ongoing support, others may require around-the-clock assistance to support them to live independently.

1.39 Many people whose degree of disability is classified as “borderline” consider that they do not receive adequate support because their disability is not sufficiently marked.

1.40 Yet people with high support needs often state that most disability resources are directed towards assisting the integration of people with low support needs.

Identifying oneself as having a disability

1.41 Another important consideration is that a person may not necessarily classify themselves as having a disability. This could be for various reasons, including a lack of self-awareness, an unwillingness to be associated with a stigmatised group or for more political reasons.

1.42 People with Aspbergers, by contrast, think it is important that they are recognised as having a disability, because this provides them with access to support services.

1.43 Deaf people do not necessarily classify themselves as having a disability. Instead, they tend to perceive themselves as a linguistic minority group.

1.44 People with mental illness do not always identify as having a disability – for some, they are disabled only when they are suffering symptoms. Others always perceive themselves as having a disability because they are always in danger of becoming sick, or because of the side-effects of their medication.

Information

Inconsistent provision of information

1.45 A key factor in the successful integration of people with disabilities is that they have awareness of the services that can assist them to participate in the community.

1.46 In previous research projects by the author involving people with a disability and their carers, a common finding has been that learning of the existence of particular services and programs, or changes to existing ones, has been a matter of chance.

1.47 Lack of information continues to be a problem – it was mentioned many times in the course of this research project.

1.48 There is widespread agreement that reliable information sources about the services available for people with a disability are lacking. There appears to be no systematic way of finding out about services.

1.49 The people interviewed expressed a concern that information about services was not readily available:

“You stumble on it. It’s not until you get desperate that you find things out.” (Person with a physical disability)

“It would be good to have someone tell you what services are available. You stumble along and one day you come across it.” (Person with a physical disability)

“You have to know what to ask. At that time you’re so unsure about everything. And you get told you’re not thinking properly.” (Person with a psychiatric disability)

Information provided at an inappropriate time

1.52 Those with an acquired disability often comment that at the time when they are most likely to be given information – when they are in hospital for initial treatment – they are often in shock and thus unable to absorb what they are being told:

“You’re in a bit of denial and a lot of things that are mentioned go in one ear and out the other.” (Person with a physical disability)

“In rehab centres, it’s information overload.” (Person with a physical disability)

“They should give something to people as they leave, something in writing. Just twenty pages, with contact numbers.” (Person with a physical disability)

1.54 Across the various disability types, there are many different needs in terms of appropriate information formats.

1.55 For example, people with a vision impairment believe their special needs are not always taken into account by disability services. They would like information in various formats, such as Braille, CD-ROM and computer disk.

1.56 Deaf people believe access to information presents a considerable barrier to their full participation in community life. They want greater availability of sign language interpreters. The hearing impaired say they want greater provision of audio loops and other appropriate technologies.

1.57 People with an intellectual disability want information provided in simple language, with minimum use of acronyms and technical terms.

SUBGROUPS

1.58 The sample for this research included various specific groups.

Aboriginal people

Disability not the only disadvantage

1.59 According to some Aboriginal people, disability is just one of the disadvantages faced by an Aboriginal person with a disability. Other barriers they face may include socio-economic disadvantage, geographical isolation and a lack of access to adequate primary health facilities. Focussing purely on the disadvantage they are experiencing due to their disability may therefore be inappropriate.

Differing attitudes to disability

1.60 Some of those interviewed for this project said that the general attitudes towards disability amongst Aboriginal people are different from those of non-indigenous people.

1.61 Amongst Aboriginal people, there may be a different response towards a person with a disability. Whereas in the non-Aboriginal community it is usually only close relatives who act as carers, in the Aboriginal community a range of people may take responsibility for the care of a person with a disability.

1.62 These Aboriginal carers may find the care of a person with a disability to be a strain, yet may only have limited access to respite services providing relief from the constant stress of caring for a person with a disability.

Discrimination

1.63 Some Aboriginal people say they have encountered discrimination when dealing with services. They prefer to access services which have Aboriginal staff members, or at least are known to be sensitive to Aboriginal culture, and which are already accessed by other Aboriginal people.

Aboriginal people and institutions

1.64 Given the very recent historical context of the “Stolen Generation”, it is also important to consider the cultural implications of having a child with a disability living away from his or her family in an institutional setting.

People from non-English speaking backgrounds

1.65 People from non-English speaking backgrounds do not appear to have equal access to disability services compared to those from English-speaking backgrounds.

1.66 There are barriers to them accessing services that relate to two key issues: information and cultural constructs.

Lower awareness of disability services

1.67 For people from non-English speaking backgrounds with limited English language skills, a lack of awareness of the existence of and understanding of the nature of disability services can present a considerable barrier to them accessing those services:

“When you don’t understand people, you don’t know if you can trust them. When you understand things, you feel such relief.” (Carer, person with an intellectual disability)

1.68 There may be differing attitudes to disability, which may impact on the likelihood of a person identifying as having a disability and thus utilising necessary services. In some cultures, a disability may be a source of great shame:

“There is great stigma in the Greek culture about mental illness.” (Person with a psychiatric disability)

1.69 From a cultural perspective, the goals set for people with a disability may be perceived to be inappropriate. For example, Italian people – and those of many other cultures – traditionally live at home until they are married. Thus, encouraging an Italian person with a disability to leave the family home and to live independently before he or she is married runs contrary to the traditions of this culture.

Family pressures

1.70 Some people from non-English speaking backgrounds said that they had more pressure from their families to achieve things, but that they were likely to be more protected from the outside world:

“Italian families are different. They’re on your back the whole time. ‘Why can’t you do this?’ It gives you the shits. So you end up smoking and then they’re on at you again.” (Person with an intellectual disability)

1.71 The experience of being a foreigner in a new land may be a difficult one. People from non-English speaking backgrounds may be struggling with more immediate hurdles than accessing appropriate disability services:

“Where we came from, we were the majority. Here we’re a minority. You lose your identity. You’re not what you used to be.” (Person with a psychiatric disability)

“Not being able to speak the language can cause stress and depression.” (Person with a psychiatric disability)

“We have no family here, so we need the moral support.” (Carer, person with an intellectual disability)

1.72 In order to overcome some of these barriers, a number of people suggested that culturally-specific services should be provided. This should ideally be within the context of a more general welfare organisation, thus raising the likelihood that people will come across and access these services:

“We need culturally specific self-help groups.” (Person with a psychiatric disability)

1.73 Within a small, closely knit ethnic community, mono-cultural services may raise the issue of privacy:

“When you’re using a service which is for your community, they could be your neighbour or someone from a friend’s family.” (Carer, person with a psychiatric disability)

1.74 Research was conducted in a range of locations throughout New South Wales, from the inner city through to remote areas. Many of the research participants had themselves experienced services in a variety of geographical settings. There was some debate about whether one is better served in the country than in the city.

Awareness of services

1.75 It is sometimes said that a person with a disability living in a rural area is less likely to “fall through the net” if living in or close to a regional centre.

1.76 Indeed, people living in rural areas seem to have a higher awareness of the various services available to them. This could be for a number of reasons:

• there are fewer services available; and/or
• the community is more closely knit and services are linked together, facilitating a faster flow of information about available services.

1.77 The number and range of services in rural areas is often limited. Thus, services in a particular area might only be able to accommodate a certain disability type or level of support needs. In response to increasing demand, services are often forced to focus on a smaller target range. Without alternative services in a particular geographical region, some people may be required to travel great distances to access a service or may be missing out on services altogether.

Access to services

1.78 For people who live in more outlying areas, access to any services is very poor:

“There are plenty of people living out at stations who fall through the cracks. They can’t get in to access the services and their families don’t get any respite.” (Person with a vision impairment)

1.79 Moreover, there is less privacy in country areas – one is far more likely to be known to other people and to service providers:

“There’s more gossip here and people are more likely to be related. If something happens, then everyone knows.” (Person with a psychiatric disability)

Awareness of the DSA

1.80 One of the key objectives for the research was to ascertain awareness and understanding of the DSA and CAMA.

1.81 However, it would be surprising to find that a high proportion of people with disabilities are aware of either piece of legislation.

1.82 While our daily lives are governed by many laws, we remain for the most part oblivious to these laws. It is really only when we have cause to challenge a particular law that we come to understand how and why it operates.

1.83 Nevertheless, approximately one quarter of the people with disabilities in the sample were aware of the DSA. Many already had some firm ideas on this legislation.

1.84 Those people interviewed who had awareness and understanding of the DSA tended to have come across the DSA in the course of their work. They were often working in an advocacy role or for other types of disability services:

“It was discussed at our advocacy service, especially when it was first brought up as a safeguard.” (Person with a vision impairment)

What is known about the DSA

Promoting the participation of people with disabilities

1.86 Amongst those who have awareness and understanding of the DSA, it is seen as legislation promoting the participation of people with a disability in the community:

“Part of it is designed for people who are at risk of being institutionalised, but who don’t need to be.” (Person with a physical disability)

“It’s meant to be a progressive Act.” (Person with a physical disability)

1.87 Some people said they understand the DSA to be supportive of the needs of individuals:

“What you want, you can ask them to provide it.” (Person with a physical disability)

“It’s about the rights and responsibilities of people with disabilities.” (Person with a physical disability)

1.88 Some people perceive the DSA as being about the way that services are provided:

“It revolves around services and setting the standards in place.” (Person with a physical disability)

“Non-government organisations have to abide by it.” (Person with a psychiatric disability)

1.89 Amongst people with a psychiatric disability, the DSA is seen to be a more just piece of legislation than the Mental Health Act:

“The DSA has been a big avenue for consumers. Most of my problems have been under the Mental Health Act. The DSA aims to give power to the consumers, whereas the Mental Health Act is all about giving power to the medical professionals.” (Person with a psychiatric disability)

1.90 Some people are aware that there are separate State and Commonwealth Disability Services Acts and think it would be better if the whole of Australia was governed by the one Act because it would make it easier to access services in other States:

“I can’t get a cab in Brisbane, because it’s covered under a different Act. And the level of service really varies from one State to another.” (Person with a physical disability)

Positive attitudes to the DSA

1.91 Amongst those people in the sample already aware of the DSA, attitudes towards the Act were fairly positive.

1.92 When the objectives were explained to the rest of the sample, they also responded positively.

Impact of the DSA

1.93 Everybody interviewed agreed that people with disabilities should be encouraged to achieve their maximum potential as members of the community.

Quality of life

1.94 More generally, participants were asked whether they thought things had improved for people with disabilities over the last five years (since the DSA became law).

1.95 The majority thought that the quality of life of people with disabilities had, indeed, improved. Much of this was due to people with a disability having more of a voice now:

“Things are getting better in a lot of areas because people with disabilities are speaking out, whereas we didn’t 20 years ago.” (Person with a vision impairment)

“It’s about having the freedom. You can make your own mistakes. Before there were always people stopping you before you made the mistake. Everybody tries to protect you, to put you in cotton wool.” (Person with an intellectual disability)

1.97 The DSA is thought to have resulted in the provision of the types of disability services that people with disabilities actually want. (Though as we shall see, it is thought that supply of these services rarely satisfies the demand for them):

“There is more accommodation.” (Person with a physical disability)

1.98 Since the introduction of the DSA, many of the people interviewed who have an intellectual disability and some of those with a physical disability have moved from institutional accommodation to community settings.

1.99 All of them consider that their lives have improved as a result.

1.100 Whilst group homes definitely represent an improvement on living in an institution, it is better still to live independently:

“In a group home, you get named. Now, there are no hassles. No people teasing and stirring.” (Person with an intellectual disability)

“It’s better living on my own. No staff to boss me around. Asking me when I’m coming home. I’d had a gutful, so I just packed up and left. It’s better now. I can come and go as I want. Do as I want. I haven’t got people standing over me and bossing me. Or yelling at me.” (Person with an intellectual disability)

“It was hard at first. I didn’t have anything. It gets a bit lonely sometimes.” (Person with an intellectual disability)

1.102 According to some of those interviewed, the DSA is not without its faults.

Inadequate protection

1.103 Some people think the DSA does not go far enough in terms of protecting people with disabilities who want to make a complaint (of course this is also relevant to the review of CAMA).

“The DSA does not go far enough to protect the disabled. They’re afraid to take their problems somewhere for fear that the service will be withdrawn.” (Person with a vision impairment)

1.104 In order for the DSA to function well, people need to know about their rights under the Act. However, it appears that it has been in the interest of services not to inform their clients about the Act:

“First you have to know it exists, because services don’t tell you there’s something there to protect your rights.” (Person with a vision impairment)

1.105 The most common complaint about the DSA related to its funding.

1.106 Even though there was generally agreement that the objectives of the DSA are appropriate, there was cynicism about the extent to which it was actually being implemented, primarily because of a lack of funding:

“Self-determination means nothing if you don’t have a choice because there aren’t enough services.” (Person with a vision impairment)

1.108 A number of people, both in metropolitan and regional locations, complained about a lack of respite services, particularly those which cater for adults with a disability.

Tighter guidelines to access services

1.109 Given the lack of funding and ever increasing demands on the system, some services were perceived to have tightened the criteria guiding who they would take on as clients:

“We’re not given respite care because we don’t fit in.” (Carer of a person with Aspbergers)

Getting funding for new services

1.111 A few people who were closely involved with disability services said it was very difficult to get funding for new services:

“It’s really hard to get funding for things that don’t already have it. For example, getting advocacy services for the visually impaired, or services for the deaf blind.” (Person with a vision impairment)

“You can grow beyond a living skill centre, but you still need a place to go. There are people attending and the activities are not at their level. There are consumers who are trying to organise things, but there are not funds.” (Person with a psychiatric disability)

1.112 For many people with a disability, spending time with others with similar disabilities can be a positive and affirming experience.

1.113 However, an inadequacy of the DSA mentioned on a number of occasions is that the Act focuses too much on integration and that it does not acknowledge that people with disabilities like to spend time with other people with disabilities.

1.114 Many people said they want to have some choice about the people with whom they spend time:

“How dare they say I can’t mix with blind people. They say you should be integrated. It’s [the DSA] brought in mainstreaming. But that’s not always best for people with disabilities. Some people can’t cope and need other people who have a similar disability around them.” (Person with a vision impairment)

“It’s good to deal with other people who have the same injury. In the community they see you as a bastard or an idiot. But people who have the same as you understand you.” (Person with acquired brain injury)

“Sometimes I want to integrate and sometimes I don’t.” (Person with a vision impairment)

“Some services are pushing people into community classes and groups and they can’t cope and they don’t want to.” (Person with a vision impairment)

“Integration into the community sounds awful. Like they’re going to make you fit the community. Surely it should be the community that changes its perspective.” (Person with Aspbergers)

“That’s why we’ve got support groups popping up everywhere. Because people feel more comfortable with people that they have things in common with. Groups can help you come to terms quicker with your disability.” (Person with a vision impairment)

Receiving services from a range of providers

1.119 Another aspect of the DSA that gives rise to comment is that people should not receive all their services from just one provider.

1.120 There is concern that this could mean that people might be subjected to increased assessment from many services and that they might not use all the services to which they were entitled:

“It’s counterproductive to use lots of services. You’re always having to be assessed and people get lost in the referral process. In the United States, all services are provided under the one roof.” (Person with a psychiatric disability)

1.121 It is thought that the DSA was introduced without sufficient consultation:

“At first there wasn’t enough discussion for us to know about it. It wasn’t discussed at a grass roots level. Once I learned about it, I was really quite ambivalent, because it seemed to have been passed without adequate consultation.” (Person with a vision impairment)

1.122 Without a detailed knowledge of the legislation, it was unlikely that everyone would have specific suggestions about how the DSA might be improved.

1.123 Amongst those with higher awareness of the Act (as previously mentioned they were often involved with disability services and advocacy organisations), some of the amendments suggested to the DSA were to:

• provide more power to the individual;
• make it law to tell people the options available;
• insist that disability services should employ more people with disabilities, particularly at a management or board level;
• limit the power of carers;
• address financial inequities faced by people with a disability who are earning; and
• extend the DSA to services not funded under the Act.

1.124 It was thought that the DSA should be amended to increase the individual power of people with disabilities, specifically in terms of determining when and how any funding should be spent:

“We know when we need to replace our wheelchairs. But we have to fill everything out in triplicate and then wait three months for approval.” (Person with a physical disability)

“In the UK, people are given the money and they choose how to spend it.” (Person with a physical disability)

“There should be more individual funding packages. Giving us the option to use the money ourselves, to change the relationship between people with disabilities and service providers. If the service you’re linked in with didn’t have the adaptive technology you wanted, you’d go somewhere else.” (Person with a vision impairment)

1.125 It was thought that the DSA needs to state more strongly state that people with disabilities should be told about the full range of options available:

“You need information to make appropriate decisions, but service providers won’t tell you about other services.” (Person with a vision impairment)

1.126 Many people suggested that the DSA should specify that people with a disability should be involved at management and board level of disability services:

“They should have more people with disabilities involved in the management of services. We need more people with disabilities to be part of the decision-making process and to be involved in service provision. I’d much prefer to learn my adaptive technology from someone who’s actually using it.” (Person with a vision impairment)

“We need more people with mental illness working in the system, to make it better for all of us.” (Person with a psychiatric disability)

“The people who make the decisions don’t know what it feels like.” (Person with a psychiatric disability)

1.127 There was concern from some people that the DSA might be amended to explicitly include carers’ rights because it was felt that they might overrule a person with a disability:

“It’s very difficult if you’re vision impaired and your parents are trying to rule your life.” (Person with a vision impairment)

Address financial inequities faced by people with disabilities who are earning

1.129 Some people with physical disabilities complained that their entitlements were reduced as soon as they were earning income or if they were with a partner who was earning.

1.130 They wanted to ensure that if people with disabilities were able to reduce their financial dependence on the State, they should not lose out entirely:

“The major complaint is that people who are physically disabled don’t become undisabled when they get married.

So we should be able to keep the pension. When I got married, I lost all my benefits. But I still have to pay for a wheelchair.” (Person with a physical disability)

“We don’t get a lot of financial assistance, particularly when we start working. People with disabilities don’t usually have finances. We can least afford to have the disability.” (Person with a physical disability)

1.131 It was suggested that the DSA could be extended to include all disability services, including those that did not rely upon government funding:

“There are services for people with disabilities that think they are above the law because they rely on charitable donations. But surely they should have to treat us with the same respect as other services are supposed to.” (Person with a visual impairment)

Awareness of CAMA

1.132 Amongst those people with disabilities interviewed, there was only very low awareness of CAMA. Those who were aware of the Act tended to be people actively involved in disability advocacy services:

“Yes, I’ve heard of it. We used to have a little booklet. Isn’t that the complaints mechanism?” (Person with an intellectual disability)

“People with disabilities don’t know about it. They should spread the word, but the government doesn’t give you the way to do it. They need to use people with disabilities to do it.” (Person with an intellectual disability)

“They’re for complaints against DOCS, not things that are funded by the DSP.” ² (Person with a vision impairment)

1.135 A very small number of people with disabilities had heard of the Community Visitor Scheme. Even fewer had heard of the Community Services Commission.

1.136 One of these had been involved with a service that had been reviewed by the Community Services Commission. They thought that it was a good organisation, but that there was more scope for liaison with other departments:

“I think it’s good. There are too many places that aren’t run properly. The Commission should be liaising with ADD³ and DOCS when a complaint is made, to see if steps are already being taken to deal with the problem.” (Carer, person with an intellectual disability)

1.137 Given the lack of specific awareness of CAMA, discussion was opened up to ascertain awareness of how to make a complaint.

1.138 Nearly all those interviewed knew that it was possible to complain about services. Some had actually made complaints about services they had used.

1.139 However, it was thought that a lot of people would not know where to go to make a complaint:

“There are a lot of people who aren’t happy and who don’t know where to go and who have not been told upfront.” (Person with a vision impairment)

How to make a complaint

1.141 Consumers were asked how they would go about making a complaint about a service:

“All agencies have a complaints procedure. But it’s only when you start to probe that you start to find out the different processes and the ways into things and how they work and function.” (Person with a vision impairment)

1.143 If the initial approach was unsuccessful then there were various suggestions about where to go next. They included:

• another service;
• an advocacy body; and/or
• the Disability Complaints Service.

Not being taken seriously

1.145 More generally, when it comes to making a complaint about a service, people with a disability think that they are not always taken seriously.

Fear of loss of services

1.146 Moreover, it could be difficult to make a complaint, particularly where there are no alternative services:

“Some people are frightened to complain because of the repercussions. For example if they’re using Homecare, they’re supposed to approach the coordinator and put it in writing. But often they’ll find they get the same staff member and that person knows they’ve made a complaint.” (Person with a physical disability)

1.147 Another problem could be that the complaint could impact on other users of the service:

“It’s hard to make a complaint when the other consumers are your friends.” (Person with an intellectual disability)

1.148 It is sometimes overwhelming for an individual to take on an organisation. The complaints process can be confronting, so many people do not apparently follow it through:

“It’s a big organisation and you’re a small person.” (Person with an intellectual disability)

“Lots of people make initial complaints, but they don’t follow them up. It’s so hard to get through the process, that people stop halfway. It’s such a hassle. So the governing bodies don’t actually find out about it.” (Person with a physical disability)

1.149 Some people said that they had considered making a complaint but had been deterred by the long wait before their complaint would be heard:

“I wanted to make a complaint last year, but the disability complaints service had a long waiting list.” (Person with a physical disability)

1.150 Even when there were positive outcomes from complaints, the resolutions were not always implemented:

“There was a complaint against State Rail that they did not announce the stations, so blind people didn’t know when to get off. They took it to the Human Rights Commission and won and they are now obliged to announce. But there are still guards that don’t do it.” (Person with a vision impairment)

1.151 A key area for change mentioned by virtually all research participants was the need for education of the wider community. It was thought that the ability of people with disabilities to integrate into the community was dependent upon the attitudes of the general public towards those disabilities.

1.152 This is something that has been raised in previous research projects by the author, but never as strongly as this time.

1.153 There was very much a sense that the types of services now provided to people with disabilities “pushed” them into the community, yet there was no sense of a “pull” from the community.

1.154 People still encounter discrimination and lack of understanding of their special needs:

“They try and hide it, but you know they are laughing at you. They don’t care about you as much as they do a normal person. You’re not worth as much.” (Person with an intellectual disability)

“Deinstitutionalisation is good but it’s hard to know how to treat people in the community.” (Person with a psychiatric disability)

“Society doesn’t want to meet us halfway.” (Person with acquired brain injury)

“With HACC services, once you tell them there’s a mental illness, they don’t want to know.” (Person with a psychiatric disability)

1.157 One person with a physical disability said that the Department had been reluctant to move them to a particular area because people in the area had complained about the numbers of tenants with disabilities.

1.158 Another person with a psychiatric disability who was living with her mother – who also suffered from mental illness – had been denied accommodation by the Department of Housing and was told she should live with her mother.

Educating the community

1.159 It was thought that greater community awareness would lead to improvements in the lives of people with disabilities:

“Understanding has a lot to do with it. We need to educate people. To do that with conversation, rather than making them read about it.” (Person with a physical disability)

“We need more understanding from the public to recognise that we have the right to live in the community. We’re not dummies and we’re not stupid.” (Person with an intellectual disability)

“If people only thought about our needs a little more. Attitudinal barriers are the biggest ones we face.” (Person with a vision impairment)

“We need to educate children at school.” (Person with a psychiatric disability)

1.161 There are a number of key issues that have been raised in the course of this research project.

1.162 Before even considering the specific Acts, it is important to acknowledge that people with disabilities are a varied group and thus there is a need to be wary of generalisations. Not only are there differences between the main disability types, but also within each disability, for example, in terms of level of support needs.

1.163 It appears that the special needs of people with a dual disability are not currently being adequately addressed and that there may be a need to establish specific services for this group.

1.164 Information, or rather the lack thereof, is a consistent issue in disability research by the author. Inadequate information about available services continues to be a problem. There appears to be no systematic way for people with disabilities to find out about available services. Information is often provided in inappropriate formats.

1.165 In the course of the research, the special needs of various groups was evident. Aboriginal people with disabilities may face many other barriers in addition to their disability, such as socio-economic disadvantage and lack of access to primary health facilities. They may encounter discrimination when utilising services and may have even greater misgivings than non-Aboriginal people about being institutionalised. Thus, there appears to be a need to consider their requirements when planning services.

1.166 If they have limited English language skills, people from non-English speaking backgrounds will often have lower awareness of disability services. Cultural differences may mean that goals set by disability services are perceived to be inappropriate. Again, service planning should take their special needs into account.

1.167 People living in regional and rural areas may slip through the disability services net. Even if they are in contact with services, there tends to be a narrower range of services in regional areas, which only cater for specific disability groups. There can often be concerns about privacy in country areas.

1.168 Turning more generally to the DSA, it appears that the Act is perceived to have been a useful and positive step in the integration into the community of people with disabilities. It has resulted in an improved quality of life for many people with disabilities, providing them with a better range of services and enabling greater participation in the community.

1.169 The main shortcoming raised in the focus groups and interviews related to the perceived inadequate funding of the DSA, rather than the legislation itself. Of specific concern is the lack of funding for new services.

1.170 Ways to increase the power of people with disabilities was often discussed. For example, it was suggested that people with disabilities should play a greater role in the management of services, as both managers and board members. It was also suggested that people with disabilities be given greater decision-making power in relation to how disability funding be spent.

1.171 Another issue that was raised was the extent to which people with disabilities are being forced to integrate into the community. Many people indicated that they wanted greater choice as to whether they spent their time with other people with disabilities.

1.172 A number of people with physical disabilities raised the issue of financial inequity for people with disabilities who are earning an income. They thought it was unfair that they be expected to pay for services and facilities that were available for free, or highly subsided rates, to people who were not working.

1.173 By comparison with the DSA, awareness of CAMA, the Community Visitor Scheme and the Community Services Commission was very low. Thus, it appears there is scope for an awareness-raising exercise for this legislation and the organisations it establishes.

1.174 However, most people appear to have an understanding of how they should go about making a complaint about a disability service. They suggest starting at the lowest level, perhaps with a manager of the relevant service. If this proves to be unsuccessful, then a higher authority should be contacted.

1.175 Nevertheless, there are still some concerns about making a complaint. It is often difficult for an individual to “take on” an organisation, because of fear of loss of services and the effect on other users. Moreover, the complaints process is perceived to be a slow one, which may deter some people from following it through.

1.176 For many people with a disability, perhaps the issue of greatest concern is that the community is not yet fully accepting of people with disabilities. People with disabilities continue to face discrimination and ridicule. Whilst social attitudes cannot change overnight, there is probably scope for a more pro-active campaign to raise the profile of people with disabilities and to educate the general community about how they should be treated.

1. The DSA was sometimes confused with the Disability Discrimination Act 1992 (Cth), probably because this has been a focus of some attention within the disability community.

2. The Disability Services Program.