Chapter 2

Challenges facing the disability sector

2.1        Evidence taken by the committee shows that the challenges facing the disability sector are substantial and that the existing system is not operating effectively. People with disabilities, carers, service providers and governments all agreed that there are many inadequacies in the choice, funding and support options available for people with a disability and their carers. The failings of the system have been well documented by the Productivity Commission in its recently released Draft Report on Disability Care and Support:

The disability support 'system' overall is inequitable, underfunded, fragmented, and inefficient and gives people with a disability little choice. It provides no certainty that people will be able to access appropriate supports when needed. While some governments have performed much better than others, and there are pockets of success, overall no disability system in any jurisdiction is working well in all of the areas where change is required.[1]

2.2        In this chapter, the committee will provide an overview of the challenges currently facing the disability support system. The committee provides this in order to consider the implications that this has for planning. For a more complete analysis of the challenges facing the disability system readers should refer to the Productivity Commission's Draft Report, Chapter 2—'Why real change is needed'.

A culture of 'crisis'

2.3        Witnesses appearing before the committee described the disability sector as having a culture of crisis. They said there was little choice about services, substantial unmet need in all areas and significant underinvestment in housing. Witnesses also described a fragmented and uncoordinated disability system: a lack of clarity in funding arrangements and a service system too complex and difficult to navigate. The committee also heard calls for improved data on disability; greater national consistency with respect to policy settings and service provision; and more flexibility and portability with funding and programs. The committee notes that under the NDA the states and territories have made commitments to reform in each of these areas but it believes that the delivery of these commitments has been poor.

2.4        In offering an assessment of the current state of planning in the disability community, the Department of Families, Housing, Community Services and Indigenous Affairs suggested that frequently planning is often only taking place at the moment of crisis. Planning, they conceded, 'has tended to be crisis driven'.[2] While regrettably, the evidence received by the committee has emphasised this point, the committee does not regard 'planning' and 'crisis' as concomitant concepts. Crisis intervention and response is not planning; it is not pre-emptive nor does it adequately anticipate future need. The committee believes that the lack of long-term thinking demonstrated by the bureaucracy has contributed to this crisis. The committee also believes that, as a community, we plan in order to avoid crisis and that good public policy is designed to prevent crises from taking place. This report will therefore examine ways to develop planning cultures that avert rather than respond to crisis.

2.5        The notion that the disability sector is 'crisis driven' was reinforced by many witnesses appearing before the committee.[3] It was widely suggested that one only comes to the notice of authorities or support services when a carer can no longer care and when the person with the disability becomes an urgent planning case. For many ageing carers, the situation is desperate and the committee has heard of numerous instances where a carer has relinquished a child in order to receive appropriate care and support. People Without Disability suggested, with respect to the availability of supported accommodation in New South Wales:

At the moment, if you want accommodation in New South Wales you join a queue. You do not get to the top of that queue unless, really, you are in crisis and the only way to leapfrog the queue is if you are in crisis. That is a sad aspect of our work: families or individuals are often brought to the point where they resort to abandonment or to rendering a person theoretically homeless before there is a response. So certainly there needs to be a significant amount of investment across the range of services in the sector.[4]

2.6        The form of crisis management that has become a feature of the system was also described as having significant implications for disability funding. Dr Ken Baker, Chief Executive of National Disability Services, suggested that funding for the disability sector was reactive rather than proactive: 'One of the perverse features of the current system is that its investment in early intervention is relatively small compared to crisis management'.[5] This suggests a more systemic problem: that the disability system is so underfunded and that governments are so overwhelmed that they can only deal with the challenges that are most urgent.

2.7        These problems are exacerbated by the underinvestment in housing. It becomes very difficult to transition someone out of the family home, for example, and into alternate accommodation, if there are no places available. As a result, there are many individuals, well into middle age, who continue to live in the parental home. Professor Christine Bigby explained:

...we do not provide the necessary support to enable people to leave home and to live independent lives with the support that is necessary. So we have this block, this brick wall, that people hit when they do have to leave home when their parents cannot care for them anymore. It has created a problem which we could easily solve in the long run by providing more supported accommodation.[6]

2.8        Scope, a disability service provider in Victoria, also suggested that managing a crisis in one part of the system only results in drawing resources from another part of the system, which in turn transfers the crisis:

In the emergency housing area, if a crisis happens the person with the disability ends up going into respite care facility. Last year in the north-western metropolitan region 50 per cent of our respite places were blocked up—it sounds awful saying 'blocked up'—and were unable to be used because of crises that had happened in ageing carers' homes and the person with the disability had to take the place for a year or two years. That meant all the other people that wanted to use respite were not able to use it because 50 per cent of our places were taken up with crises.[7]

2.9        It is not just that resources are constantly being shifted to manage cases of crisis, but many carers only seek assistance when crisis occurs.[8] Many carers, having lost confidence in the sector, do not have any engagement with the service system and it is only when they can no longer care that they seek to re-engage the system. While this demonstrates that there are various drivers that contribute to instances of crisis, it also reinforces that there are significant levels of unmet need.

2.10      Evidence provided to the committee has made it clear that there is significant underinvestment in the sector and that there are simply not enough resources to adequately support people with disabilities. Nevertheless, the committee found it difficult to obtain specific data on levels of unmet need. While the states and territories are obliged to agree on measures to determine unmet need under the NDA, the committee heard from FaHCSIA that the department is still working with state officials on how best this can be achieved:

We have been working with state officials on a NDA priority called better measurement of unmet need. There is a national report in draft form on that. I said there were a number of methodologies. That report takes quite a sophisticated actuarial approach to measuring unmet need. There are other approaches around and you get slightly different answers when you look at them. The unmet need report is going to go to ministers again soon—around the middle of the year—for them to consider publishing it. Actually we are quite happy with the national progress on measuring unmet need.[9]

2.11      Beyond the levels of unmet need discussed here, the committee is concerned that there is currently no sense that individuals have a right to support—there is no entitlement based on need. In this respect there is a significant gap between what is said, or what is aspired to, and what is being delivered on the ground. Related to the question of rights is the question of choice. For it is not simply that there is little choice in services, or service providers, but often people are reluctant to relinquish one form of care, not because that care suits them or meets their need, but because they feel that there is nothing to replace it. The notion of choice suggests corresponding options and in many instances these simply do not exist. As the submission from Mai-Wel indicates: 'Choice is only good if you have alternatives'.[10]

Navigating the disability system

2.12      In addition to the problems associated with unmet need and the lack of choice, many witnesses expressed concern about the complexity of the disability support system. There is no central or single access point for information about disability support, there is little clarity in funding arrangements and consumers suggest that the system is fragmented and difficult to navigate. Many individuals do not know where to turn for help and many more do not actually know what help is available. It represents what the Productivity Commission has referred to as the 'lottery' of access to services.[11]

2.13      In Chapter 3, the committee will examine the gaps that have developed as a result of the split of the funding and responsibilities between Commonwealth and state and territory governments and the complexity of moving between the disability and aged care sectors. It appears that, from the point of view of consumers, there is an unclear division over Commonwealth and state responsibilities, the system is complex and difficult to navigate, and there are problems with the interfaces between federal and state programs. Here the committee wishes to identify some of the major problems associated with navigating the disability system.

2.14      One of the most striking aspects of the evidence taken by the committee was that concerning the availability and accessibility of information. Common criticisms are that there is no single access point for consumers, no centralised repository of information about services, and that there are difficulties accessing information. The committee notes that under the NDA, states and territories must address the difficulties that consumers have accessing information.[12]

2.15      Other witnesses drew parallels between access to information and choice: 'Knowing what your choices are is a fundamental part of being able to make a choice'.[13] For many people with disability the information is often inaccessible: 

For a lot of people with disabilities the information that is provided might be at a higher language level or it might be in English which, if you have been speaking Auslan your entire life or if you use Makaton or another form of communication, is not necessarily appropriate.[14]

2.16      Concerns were also raised with the committee about access for people from non-English speaking backgrounds and for older people not connected to the internet.[15]

2.17      Mrs Joan Hughes, CEO Carers Australia, spoke directly of the implications that poor access to information has for planning:

Often carers are so tired and cynical in a way that they just feel they cannot go through what they need to in order to find viable options. Often carers are not aware or informed of these options or what services are available and as such they do not have the capacity to plan.

Carers have consistently reported to us that searching for relevant information is very stressful to them. It is time consuming and sometimes it does not eventuate in clear options for how they will progress their future and for the people they are supporting. You can imagine how exhausting this process must be for them.

Information is the key piece of the future planning puzzle, and it cannot be expected that carers have the time and resources to seek this information out on their own. Carers Australia believes that every effort must be made to simplify this process and assist carers in having sufficient information to make informed choices for their futures and the people in their families.[16]

2.18      The complexity of the service system and the availability of support arrangements act as another significant barrier to planning. Speaking about the complexity of the system Dr Ken Baker, Chief Executive of National Disability Services, observed:

Even for someone in my position who makes a full-time job of knowing the disability service system, it is still very complicated. I cannot imagine how family carers, people with disability and even service providers find their way around the current system. The eligibility criteria are complicated, pathways between service types often end up as dead ends and the articulation between different programs and service systems and between state and federal programs is poor. This essentially generates, I think, both risk aversion and bewilderment on the part of family carers. They do not feel empowered by this system. It is too complicated. They feel risk-averse because they feel that if they, for example, encourage a son or daughter to try employment and employment does not work out then they may be left with nothing or they may be at the back of the queue. The complexity is a product of the highly rationed funding. A lot of the administrative effort within state and federal departments goes into refining the rationing rules and building the gateways rather than looking at ways in which pathways and access to services can be opened up.[17]

2.19      With respect to current arrangements for funding and support across disability and aged care sectors, those under 65 are currently a state responsibility whereas those over 65 are a Commonwealth responsibility. In many instances this administrative distinction is difficult for consumers to understand. This is particularly so for those people under 65 with a disability who suffer from degenerative conditions, and for those experiencing premature ageing and who require support from aged care service providers. The complexity attached to these age thresholds is covered in Chapters 3 and 4.

2.20      The sense of complexity, as stated by the CEO of a peak intellectual disability organisation, was reiterated by consumers. Ms Margaret Cooper, Women with Disabilities Australia, explained that she relies upon six organisations to provide her care package for post-polio syndrome. This involves five different programs with four different team leaders; each has its own administrative procedures and administration costs.[18] Ms Cooper added with respect to the proposed increase to the retirement age to 67:

I understand there is some change, anticipating 2011. I am now 67 and next year I will be officially aged. Talking to my three case managers and four team leaders, I said, 'What's this going to mean for me?' The answer: I do not know. 'Am I going to be transferred to aged care and, if so, what happens to the disability part of me?' I see myself as disabled and getting older, but a lot of my friends just see themselves as disabled. We do not know what is going to happen. There is a lot of worry out there; we just do not know...

I do hydrotherapy once a week to keep me flexible. As soon as I turned 66, the agency that funds that care said, 'Right, you are now in aged care; we are changing your service provider,' and they changed me to a provider that had very little experience with disability. Being able to talk better last year than this year, I yelled and carried on and asserted myself and finally got my hydrotherapy transferred back to a provider with disability experience. If I had not done that I would have been in aged care, teaching them how to look after me. I do not think that is appropriate. That was a preliminary battle, and that case manager from that agency said, 'Margaret, get ready for 2011.' Great.[19]

2.21      The complexity is then magnified when considering the way that the Disability Support Pension (DSP) interacts with aged care. For example, if a person turns 65 and chooses to remain on the DSP but then requires aged care services, or moves to the Age Pension but still requires disability services, it is unclear whether services can be accessed on either pension or whether the person must switch between pensions to obtain appropriate services.[20] This is an example of the lack of clarity and continuity that exists for people moving between the DSP and the aged care pension.

2.22      With respect to assessment more generally, many individuals also reported difficulties obtaining an adequate multidisciplinary assessment. Evidence indicates that there are insufficient assessment tools for people with degenerative conditions and for those experiencing premature ageing. The point was made time and again that, without adequate assessment, it is extremely difficult to create a tailor-made, or individualised, care plan. The interaction between the disability and aged care sectors and the aged care assessment process will be examined in more detail in Chapter 4.

2.23      The committee has further concerns about the interface between disability and ageing as it relates to supported employment and retirement from Australian Disability Enterprises (ADEs). Evidence suggests that people with disabilities have difficulty retiring because of a lack of support services outside of the ADE and that this also has implications for younger people with disabilities who seek employment.[21]

2.24      JacksonRyan partners suggested that part of the confusion arises as a result of national inconsistency with respect to policy and legislative settings:

...variations in legislation underpin much of the real confusion and ignorance about policy, decision making and programs which surround people with a disability, their families and carers. These variations arise whether it is Victoria compared with the Commonwealth or Victoria compared with other states and territories. No matter how similar the acts may be or how aligned that the legislation regulations may be—and I use the word 'aligned' because that is the word that is in the National Disability Agreement—with national policy and reform direction as required by the National Disability Agreement, I cannot emphasise too strongly that, while high level agreement may be reached on the ground with the service providers, in family homes around the nation confusion and ignorance abound.[22]

2.25      It is critical that there is consistency of quality standards and portability of aids and equipment across the states and territories, as agreed to under the NDA. The committee would like to reinforce that the states and territories have not delivered on their commitment under the NDA. Matters of legislative and policy consistency will be explored more in the following chapter. The committee would like to reinforce that the states and territories have not delivered on their commitment to the NDA.

2.26      In this chapter the committee has offered a snapshot of the challenges facing the disability sector. In so doing the committee has sought to build on the evidence taken by the Productivity Commission as it is reported in its Draft Report into Disability Care and Support. In the following chapters the committee will examine many of these challenges in more detail through examining the implications they have for planning.

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