Chapter 5

Barriers to planning

5.1 In the last chapter the committee considered some of the challenges faced by carers and some of the reasons why planning may not take place. It was identified that many carers are not receiving planning assistance from specialist support networks until it is too late. Further, in examining the profile of the parent-carer, it was suggested that many parent-carers are so consumed by their caring role they do not have the time, energy or resources to plan. In this chapter the committee examines barriers to planning in more detail. It provides a summary of recent studies on barriers to planning, and then draws upon evidence obtained during the inquiry to identify three major impediments to planning: access and availability of information; access to services (including: accommodation, respite, legal and financial advice and counselling); and a lack of confidence in the system. Following this the committee will briefly consider barriers to planning for specific groups: people with a mental illness, people with an intellectual disability, Aboriginal and Torres Strait Islander people and people living in regional and remote areas.

Studies on barriers to planning

5.2 In October 2010, Anglicare Sydney released a study of carers of people with disability, Care to live or live to care? The study was undertaken with 289 carers, 87.5 per cent of whom cared for an adult son or daughter. Of those surveyed, 39 per cent were aged 75 or over and 20 per cent were aged 80 or over.[1] Despite their age, only one in four had a plan for the future care of their disabled son or daughter. Eight out of ten were anxious about the future of the son or daughter for whom they cared and more than half said that they needed time out from their caring role.[2] The study also provided a gap analysis which compared the support considered to be important and the support carers actually receive. Revealingly, four out of five carers ranked the development of a transition plan as important but only one in ten had been supported to develop such a plan.[3]

5.3 The results of the Anglicare study were reinforced by an Australian Government Discussion Paper on Succession Planning for Carers, released in early 2007. The Discussion Paper was the product of a series of national consultations with carers that sought to identify the needs of families in relation to future planning. The key barriers outlined in the report included:

Families do not know where to start; who to go to; where to find information or what to do;
The costs of disability and caring are such that many parents may not have accumulated many assets in their lifetime and may not be able to financially provide for their child's future, without significant government assistance;
Future planning is a sensitive issue, challenging family assumptions and requiring people to face their own mortality and discuss personal issues and information;
A planned transition is not considered feasible while services and governments continue to place only those people with disabilities in crisis or emergency situations;
Many carers are too busy or tired from day-to-day responsibilities to be able to find the energy to undertake the complex and time-consuming task of planning for the future;
Many ageing carers may not have expected their son or daughter to outlive them and may have unrealistic expectations around what governments, services and family members can provide when they need to relinquish care;
Future planning is an extremely complex issue, across state, territory and Commonwealth law and regulations covering financial, legal, property, taxation and government support issues. Circumstances will change between any plan and its implementation, and establishing support networks is hard work.[4]

Availability and access to information

5.4 The committee received strong evidence demonstrating that there are significant problems with the availability and accessibility of information about disability services and planning support. The major concerns with availability relate to the fact that there is no single access point for information, and that information about options is hard to find. Further, that searching for relevant information is stressful and time consuming, and carers do not have the time and resources to seek this information out on their own. The committee identified that there were at least three concerns related to the availability of information: information about services; information about entitlements; and information about planning.

5.5 Carers need information about available services in order to plan for the future, and primary carers in particular can only contemplate the future with an awareness of alternative care arrangements. However, the committee heard that carers are often not aware about available service options, and that it is unclear what services are provided and funded by different tiers of government.

5.6 In Chapter 2 the committee cited evidence from Ms Joan Hughes, Chief Executive Officer, Carers Australia, in which she suggested that 'Information is the key piece of the future planning puzzle'. She continued:

Even with improved services, a lack of information when carers need to plan for the future is a significant issue. We still have levels of service provided and funded by tiers of governments and through different programs even at the federal level for carers...

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 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.[5]

5.7 Down Syndrome NSW suggested that carers usually find out about services through 'word of mouth and informal networks'.[6] This shortcoming in the availability of information extends in some cases to a lack of information about entitlements.

5.8 Future planning is difficult for carers who face immediate challenges accessing services and entitlements. Contemplating future plans in itself is complex for carers; any problem accessing information to assist with such planning adds an unnecessary layer of complexity. However, the committee heard that in many cases, difficulties planning are amplified by difficulties accessing information about planning, as Carers Victoria explained:

There is poor access for older people and older people with a disability to get assistance with what are essentially complex and multifaceted tasks in planning for the future. I think the advice families get is piecemeal rather than comprehensive and the planning tasks involved require a whole lot of knowledge and expertise. For example, to have access to discussion about housing and support options and models in collaboration with the person with a disability and other significant people, you need to know about financial planning for the future. You need to know about rules in estate planning, about distributing your property and your assets and how you might record future wishes within those. You need an understanding of formal guardianship and financial administration, what they offer, what the weaknesses are. You need to know about the pros and cons of various forms of trust arrangements for your son or daughter. You need an understanding of the operation and implications of Centrelink's income and assets test and gifting rule. You need the opportunity for family discussion about roles in succession plans, family plans, support networks in the future for the person with a disability and you need to develop and share with significant others emergency care plans, what happens when you are ill; when you are carted off to hospital, how the care of your son or daughter can be maintained.[7]

5.9 Like information about services, information about planning is often gained informally or as a consequence of carers coming into contact with service providers in relation to another matter, as Perth Home Care Services explained: 'People might come to the agency for some specific respite...and we will use that opportunity to talk to them about their plans for the future'.[8]

Centrelink payments

5.10 People with a disability who cannot work are likely to be eligible for entitlements such as the Disability Support Pension, and their carers are likely to be eligible for the Carer Allowance (see Chapter 3). These payments are designed to assist people with a disability and their carers, but as with services, cannot be of benefit if carers are unaware of their eligibility.

5.11 Some form of payment has been available to parent-carers of children with a disability since 1974. The current payment, Carers Allowance, was introduced in 1999.[9] The FaHCSIA Statistical Paper No. 9, Income support customers, indicates that the uptake of Carers Allowance increased dramatically from supporting 37,746 carers in 1990 to supporting 495,733 carers in 2010.[10] However, the committee heard that there are still carers who are not aware of either the payment or their eligibility to receive it. Mrs Jill O'Connor, Down Syndrome NSW, explained:

We still come across people—it is almost unbelievable; we are nearly in 2011—who do not know that they are entitled to a carers allowance.[11]

5.12 When this was put to FaHCSIA, Ms Helen Bedford conceded that she was aware that there is a significant proportion of carers not supported by Centrelink payments:

When we did the consultations for the supported accommodation, carers turned up who were not part of the Centrelink system. I have seen figures in some reports from community groups that say that 25 per cent of carers are not in the system at all.[12]

5.13 While some carers may be aware of Centrelink entitlements but choose not to avail themselves of payments, Down Syndrome NSW's evidence suggests that there are carers who would access payments if they realised they were eligible.

5.14 In Chapter 1, the committee noted the 2009 House of Representatives Standing Committee on Family, Community, Housing and Youth report, Who Cares...?: Report on the inquiry into Better Support for Carers, and in particular, Recommendation 22. This recommendation was that Centrelink establish a dedicated Carer/Disability Unit to assist care givers and receivers. The government responded by noting the existing Centrelink mechanisms that address carers' needs for advice and information. The evidence received by the committee suggests that such mechanisms are still not benefiting all carers who need advice.

Limitations of web-based information

5.15 Whether it relates to information about services or planning, witnesses agreed that searching for relevant information is time consuming, stressful and frequently did not deliver a result. The committee heard that many older carers are unlikely to have high computer literacy, and need information in alternative formats:

In our client group we have people in their 40s and 50s, which naturally means that some of the family members and carers are in their 60s, 70s or thereabouts and have not really grown up in a technological age. They find that quite confronting...

There is a presumption made at times, I think, that once it has gone out on the net it is there and everyone has access to it. It is not necessarily the case.[13]

5.16 As the internet has become the primary medium for information distribution, well-developed technological skills are required to navigate the information picked up by search engines and contained on websites. While internet-based information may effectively reach some audiences, it is unlikely to fulfil the needs of all older parent-carers. It is unreasonable to expect that a carer of person with a disability could successfully navigate complex information online during a couple of hours of respite.

5.17 Problems with the provision or availability of information becomes more acute in cases where carers experience difficulty reading, either due to ailing vision or a lack of familiarity with the English language. Mr Ah Tong-Pereira, Vision Australia, suggested that only three to five per cent of all published information is available to people who are blind or have low vision, and emphasised the need for information about planning to be provided in formats accessible to vision impaired people:

We have looked at future information around planning services. For example, if I want to find out about aged care services, about what the options are for nursing homes or about options for volunteering, the information that is provided generally to the public needs to be made available in a format that can be accessed—electronically, braille, audio, large print and those sorts of areas.[14]

5.18 People who speak a language other than English as their first language may also experience additional difficulties reading available information on disability and planning assistance:

It takes 10 years to be eligible to get the disability support pension once you have arrived in Australia if you have disability. So that, combined with the additional language barriers and perhaps cultural perceptions around disability, might mean that those people have a much more limited access to information.[15]

5.19 The Australian Federation of Disability Organisations explained that people from low socioeconomic backgrounds, including a significant proportion of people from Culturally and Linguistically Diverse (CaLD) backgrounds, are less likely to have internet access. The committee heard that clear, accessible information for carers and people with a disability that is currently not delivered, and cannot be delivered, via the internet.

Centralised information

5.20 It is clear that shortcomings in the way information is currently made available is a significant barrier to carers seeking to plan for when they 'can no longer care'. As discussed in Chapter 3, while Commonwealth Respite and Carelink Centres do provide information to carers, some witnesses made suggestions for reform. Carers Australia noted that the government is already taking steps to facilitate education and training for carers, and suggests that a module or workshop on planning options would fit well into this training.[16] Carers Australia, alongside a number of other groups, also suggested that there needs to be more centralised information provision, such as via a national information line or resource guide.[17] Mr Heckendorf suggested that centres of disability excellence be established to provide information and research to specialists and others working or participating in the disability system.[18]

5.21 Other witnesses expressed their support for a one-stop-shop for disability services. The states and territories are working to consider this option as part of their obligations under the National Disability Agreement (see Chapter 3). The NDA prescribes a number of conditions that states must comply with in order to receive disability funding, including the requirement to consider a single access point (also called a one-stop-shop) for disability services. One example of progress on the establishment of one-stop-shops is the Northern Territory Office of Disability.

5.22 The Office of Disability was established in Darwin in May 2010 in response to recommendations from a KPMG Review of Disability Services in the Northern Territory calling for a new integrated model of service delivery. The Office provides integrated aged care and disability service functions which include: a general information and inquiries service; first point of intake for entry into the aged and disability service sector in Darwin; and space for consumers and the sector to hold meetings and client consultation rooms. The office also has a shopfront in Alice Springs to meet service needs in Central Australia. The Northern Territory Minister of Health informed the committee:

The Office of Disability have been successful in establishing networks across both general and specialised disability areas in order to incorporate information from a range of organisations and to support information and referral services. This has occurred at the regional level and has been supported by dedicated resources, namely staff who have worked to establish an identity and regional presence and build relationships across priority service areas accessed by people with disabilities.[19]

5.23 While acknowledging the benefits that a centralised system could have in enabling carers to access appropriate services and information, the committee is also aware that it is local service providers which are most likely to be of assistance to carers. It would therefore be imperative that a centralised service was able to refer people locally, and that local service providers were adequately funded and equipped to provide assistance to people with a disability and their carers.

Committee view

5.24 While the committee acknowledges the role undertaken by Commonwealth Respite and Carelink Centres, it is concerned that information about disability services and planning options is not reaching its target audience. The committee urges all government agencies involved in disability services provision to consider alternative methods of information communication, in consultation with local disability service providers which have first-hand awareness of the needs of the target audience.

Recommendation 5

The committee notes the National Disability Agreement requirement for states and territories to consider one-stop-shops for disability services. The committee recommends that the Commonwealth, in consultation with the states and territories, establish its own presence and representation at one-stop-shops. The committee considers that one-stop-shops must be capable of directing enquiries towards whichever service is most appropriate, whether that service is provided at a state, territory or Commonwealth level. Further, the committee endorses Recommendation 22 of the Who Cares...? Report on the inquiry into better support for carers, calling for the establishment of a dedicated Carer / Disability Unit at Centrelink. This dedicated Unit should be accessible via disability services one-stop-shops.

Recommendation 6

The Committee recommends that the Department of Families, Housing, Community Services and Indigenous Affairs improve its website to make information about disability services and planning support more up-to-date, comprehensive and navigable. In so doing, the Department should establish a working group, which includes carers, people with disabilities and disability services organisations, to seek feedback on matters of design, utility and accessibility.

Recommendation 7

While the committee would like to see improvement in the quality and accessibility of information on government websites for people with disabilities and their carers, it also mindful of the limited reach of new technologies. In acknowledgement of this, the committee recommends that all levels of government should consider effective non-web-based tools for the communication of critical information on disability and planning services. The working group suggested in Recommendation 5 should also be engaged for this purpose.

Recommendation 8

The committee is seriously concerned by evidence suggesting that as many as 25 per cent of carers are not linked in with Centrelink and therefore are not receiving payment to which they are entitled. The committee therefore recommends that Centrelink review its communication strategy with respect to carers and engage local disability service providers more directly.

Availability of services

5.25 Parent-carers of people with a disability provide enormous unpaid assistance to their sons and daughters, which can include help with everyday tasks, managing finances and navigating the disability service system. In considering planning options for people with a disability, carers must be confident both that appropriate services are available and that the person with a disability will be able to obtain these services. The committee heard that services are not available to all those who need them, and that this failure of the disability system prevents ageing carers from planning for the future:

Unfortunately, there are still some barriers within the planning and access to those programs. I think only 10 people over our entire organisation were able to get places in those programs. It has been Mai-Wel’s experience that accessing services for people with a disability who are ageing is inequitable. It is based on crisis rather than forward planning, and there are insufficient programs and services out there to meet the needs of all those who require them...[20]

5.26 As well as the range of specialist disability services people with a disability require, there are some services that have particular relevance to planning. These include: accommodation, respite care, financial and legal advice and counselling.

Accommodation and respite places

5.27 In Chapter 1 the committee considered the how unmet need, lack of choice and underinvestment in housing across the disability sector has affected the capacity of families to plan. The committee acknowledges the additional accommodation places are being provided, such as via programs such as NSW's Stronger Together program, but heard from witnesses that such places are not sufficient to meet demand:

The issues around transition are inextricably linked to the lack of services and provision of accommodation. If there were sufficient disability supported accommodation available to people with disabilities when they chose to leave their parents' home—whether that be in young adulthood or in middle age—we would not have such a major problem. So the problem is created by the lack of accommodation within the system.[21]

5.28 The committee heard that there is demand for a range of long-term, supported accommodation options for people with disabilities. People have different needs and wishes and therefore require availability and choice of accommodation. Options referred to during the inquiry included: group homes, congregate care or small group living, key-ring accommodation, village-style accommodation, international communities, shared care and aged care facilities.[22] Regardless of the preferred option, witnesses felt that it was important that accommodation also supported people's 'wellbeing, social inclusion [and] health needs'.[23]

5.29 Respite care also has an important role in future planning because the everyday demands on carers' time does not leave any space to think about the future. Carers of people with a disability are often involved in around-the-clock care and do not have time to think about the future. The committee heard that, 'for many people, just coping day-to-day and week-to-week is really all they can manage.'[24] The committee heard that it is usually during periods of respite that carers are able to begin to think beyond the immediate needs of their relative with a disability. As Perth Home Care Services explained:

The general barrier is mostly about people being able to feel that it is something they can even start to think about...

So the time-off and planning went together because if you could give people time off, then they were able to move their headspace into thinking about planning.[25]

5.30 However, the committee received overwhelming evidence that there are insufficient respite places available. Due to under-provision and the 'crisis-driven' nature of the disability system, normal respite needs are not being met because respite places must be prioritised to support people in crisis:

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.[26]

5.31 Problems accessing government funded respite has provided impetus for carers to look to other means to access respite services, such as via local service providers such as Mai-Wel:

We have a four-bedroom unfunded respite facility that was set up again through fundraising—it was set up through our women's auxiliary—and we have been able to get some small blocks of funding here and there...[27]

Committee view

5.32 The committee believes that inadequate investment in accommodation places is significantly affecting families' ability to plan. For people with a disability who currently live with a parent-carer, confidence in accommodation options is integral to future planning. The committee considers that increased accommodation places would enable families to plan for the future, secure in the knowledge that there will be somewhere appropriate for their son or daughter to live.

5.33 Further, the committee considers that the opportunity for respite is key to enabling carers to move into a planning headspace. The committee recognises and commends the respite options offered by organisations such as Perth Home Care Services, and the efforts of other non-government service providers such as Mai-Wel, to assist people to access respite. The committee believes that greater provision of respite places is an essential part of enabling the disability sector to move away from the current 'crisis-driven' approach, and towards encouraging a planning culture that addresses the long-term needs of people with a disability.

Access to financial and legal advice

5.34 People with a disability and their carers need access to financial resources in order to plan for the future. However, as discussed in Chapter 4, carers are often completely preoccupied with caring and have little opportunity for participation in the wider workforce. In addition, people with a disability who work in supported employment, or are not employed at all, are similarly unlikely to have access to significant financial resources.[28]

5.35 This has repercussions for future planning because while home care is generally provided on an unpaid basis, or supported only by the Carers Allowance, future care options are likely to include utilising fee-based services. This requires carers to have an understanding of financial management and the legal system.

5.36 The committee heard that existing planning and financial difficulties are often exacerbated by a lack of technical knowledge about these issues:

[People with severe and profound lifelong disabilities] have very little opportunity to build wealth in their own right. I think it is very unfair to penalise these people by having income and asset tests. Furthermore, if my parents are thinking about making a will and leaving the house to me or leaving it to my siblings, a common mistake is to think: if I leave it to David he will lose his pension.[29]

5.37 The committee heard that carers may need advice in order to navigate existing financial and legal frameworks such as Centrelink payments and rules, Special Disability Trusts and legal guardians and wills. While information is available on government websites, these websites often include a disclaimer advising carers to access specialist financial and legal advice, for example, 'Centrelink recommends consulting with a financial advisor and/or a solicitor for advice before establishing a Special Disability Trust'.[30]

5.38 Dr Baker, National Disability Services, explained that carers need specialist advice in order to plan effectively:

People need an advice service because the range of things family carers need to consider are quite complex and do include financial and legal considerations, as well as trying to work out an appropriate sustainable service response. I would have thought that special disability trusts alone are very difficult for ordinary people to understand.[31]

5.39 The committee also heard that in some states, the legal system can act as an impediment to planning. Carers Victoria explained that carers and people with a disability cannot make anticipatory decisions to appoint enduring guardians or attorneys, and legal mechanisms operate as a crisis-driven 'last resort', which is 'not a suitable arrangement for helping people with a disability with their legal and financial matters.'[32] However, the legal expertise required to navigate issues related to disability is complex and expensive:

Consideration might also be given to funded independent legal services for parents so that the cost of making wills and drawing up Trust documentation is negated. Legal advice in the area of disability is specialised so a list of experienced lawyers specialising in this area and operating in conjunction with groups like the Future Living Trust would greatly assist parents.[33]

5.40 It is clear that carers and people with a disability need access to specialist advice to navigate the complicated financial and legal issues involved in planning. Current services and payments arrangements are difficult to navigate, especially in a planning context. The committee considers that there is a disconnect between the government services and payment systems offered and the expertise necessary to navigate these systems. People with a disability and their carers need financial and legal advice to inform their planning decisions. As Family Advocacy expressed, 'I think probably the financial intermediary will be the key for many people in going forwards'.[34]

Recommendation 9

Within the framework of life-long planning, the committee recommends that the government facilitate the provision of specialist financial and legal advice to people with a disability and their carers to assist them with planning decisions, including the decision to utilise a Special Disability Trust. This advice could be made available via:

Commonwealth funded financial and legal planning workshops specifically targeted to address the issues that arise in disability planning;
The provision of specialist advice through an established Disability / Carers' Unit at Centrelink; and / or
Commonwealth funded independent legal services specialising in disability services, potentially operating in conjunction with non-government service organisations, and nationally registered on a list accessible to people with a disability and their carers.

Information and counselling

5.41 While access to counselling may be perceived as less vital than access to financial and legal advice, for many carers, planning for the future is a confronting process. Counselling can assist carers to contemplate difficult decisions, and take first steps to seek out practical assistance measures. The committee heard that the National Carer Counselling Program, in operation since 2003 and delivered via state-based carers' associations, is a useful initiative and has been well-received by carers. The program assists 6,000 carers Australia-wide, representing 0.3 per cent of the national carer population.[35] As Carers Australia explained, 'many [carers] may need significant assistance, information or even counselling before they even begin to think long-term and plan for the future.'[36]

5.42 The committee suggests that the National Carer Counselling Program be expanded to reach a greater proportion of the carer population. The provision of counselling services also has the potential to overcome some of the personal sensitivities raised by the prospect of future planning.

Confidence in the system

5.43 A carer who feels as though they have been battling with the disability service system over the entire life of their adult son or daughter with a disability is unlikely to be inclined to turn to the system for help with planning. Submissions were almost unanimous in reporting that carers experience significant challenges accessing services and information, and in the process many lose confidence in the disability system. A carer who has experienced difficulty navigating the system to access a relatively immediate or short-term service will not be able to contemplate the potential complexity of resolving long-term planning questions:

I could not tell you how many assessments I have had to do for every single person who has come into the house from different services. Even though it is for the same thing you have to go through the same assessment all over again. It is a pain in the neck.[37]

5.44 In this respect, it is clear that for ageing carers to have confidence in considering options for future care, the wider disability system needs to deliver better services across the whole life of a person with a disability. As Dr Baker explained:

...I think society has an obligation to provide these people with greater certainty and greater peace of mind about the future care and support of their son or daughter. We cannot do that in any systematic way without overhauling the basis on which we fund and provide disability services.[38]

5.45 In addition to issues with the disability system, carers also have the same concerns as parents of children without a disability relating to their adult son or daughter becoming more independent. These concerns are even more worrying for parents of children with a disability as they consider the difficulties their adult children might experience navigating the outside world. In the same way, some people with a disability are keen to leave home and others would prefer to continue living with their parents.[39] As suggested in Chapter 4, it can be difficult for carers to come to terms with the prospect of living without a dependent child:

...sometimes the adult child with disability is really keen to take off in a particular direction, but it is their ageing parents who have a hard time imagining what it would be like for that child to be out in the world...just like you and I, sometimes a parent is ready to let go and sometimes not.[40]

5.46 While this chapter has outlined the significant barriers to planning faced by most carers, there are particular groups for whom planning presents specific difficulties.

Barriers to planning for certain groups

Barriers to planning for people with a mental illness

5.47 The committee heard that it can be particularly difficult for carers of people with a mental illness to plan for the future. The episodic nature of some mental illnesses has implications for service delivery. When people are well they are less reliant on care and support but episodes of illness can have significant flow-on effects such as the loss of accommodation.[41] In addition, people with a mental illness and their carers may experience difficulties accessing payments, services or planning arrangements such as the Special Disability Trust because the definition of 'severe disability' can result in the non-eligibility of people with episodic illnesses. While representatives from FaHCSIA did not eliminate the possibility that people with episodic illness could be considered eligible for SDTs, Dr Nick Hartland suggested:

I think it is true to say that when we established special disability trusts we did have, if you like, an image of a permanent, ongoing disability, so it was about a lifetime provision. I think also it is true to say that we did not anticipate that they would be a vehicle for people caring for someone with an episodic illness.[42]

5.48 The committee expresses concern that people with episodic mental illness may be excluded from entitlements and schemes such as Special Disability Trusts.

5.49 The Mental Health Council of Australia explained that caring for a person with an episodic mental illness can also be difficult because that person may consider the carer to be part of the problem and that this has implications for planning. The Council further noted that privacy restrictions on carers knowing about their son or daughter's medication presents a practical impediment to even short-term planning.[43]

5.50 The Council emphasised that high staff turnover within a fragmented system contributes to poor case management and poor service coordination.[44] In this respect, the Council welcomed the Personal Helpers and Mentors Program, which is operated by FaHCSIA. This program provides a support worker to help a person with a disability to access community services and social opportunities, as well as assisting with building confidence and everyday practical needs.[45]

5.51 The committee acknowledges the additional planning challenges faced by parent-carers of people with a mental illness. It stresses the importance of a coordinated approach to care that includes continuity in case management, support via the Personal Helpers and Mentors Program, and the involvement of parent-carers.

Barriers to planning for people with intellectual disabilities

5.52 The committee recognises that the abilities of people with an intellectual disability varies widely, and does not seek to classify people into groups. However, some people with an intellectual disability may be unable to contemplate the future as an abstract concept, while others may be capable of expressing their preference for one planning option over another but not be capable of putting their preference into practice. The committee heard evidence of non-government sector involvement in planning for people with an intellectual disability. Organisations such as Pave the Way provide family-centred planning assistance to people with an intellectual disability 'who do not have the capacity to make decisions for their own life.'[46] Other organisations involve people who can participate in decision making to do so, such as the recent decision by People with Disabilities Australia to allow people with a cognitive impairment to participate on their board.[47]

5.53 It should also be noted that many people with intellectual disabilities have difficulty adjusting to change, and that this will have implications for future planning. Integrated forward planning that takes the person with an intellectual disabilities' needs and wishes into account is particularly important in minimising dislocation, as Ms Baker explained:

I want the right to choose with him the type of housing he would be most suited to, long before he has to go in so that he can become familiar with the people, the surroundings and the philosophy so that when the time comes it will be as easy for him as possible. The separation for him is going to be frightening and for me it is going to be equally bad, but it will be less so if he is familiar with where he is going.[48]

5.54 While some parent-carers may consider there is no other option apart from aged care future planning, the committee also heard that aged care facilities are not ideal for younger people with intellectual disabilities:

Those people's health needs are met very well in residential aged care, but their social integration needs are not. They are isolated. They are a very unique group within those residential aged-care facilities. There are only two or three in each facility, and the staff have no idea about how to deal with them. Other residents do not like them being there particularly, and other residents’ families do not like them there either...[49]

5.55 The committee recognises that it can be particularly difficult for parent-carers of people with an intellectual disability to identify viable future planning options. The committee recognises the need for planning services that assist people from the point of diagnosis. The committee considers that the current crisis-driven approach to disability services is particularly inappropriate for people with an intellectual disability. Plans need to be in place early for people with an intellectual disability so they have time to adapt to new circumstances and to develop the necessary skills and independence needed to live away from the parent-carer.[50] In particular, parent-carers and family carers need assistance and time to develop ways to replace their own roles in supervising the quality of their loved one's life.

Barriers to planning for Aboriginal and Torres Strait Islander people and people living in regional and remote areas

5.56 The need for better disability service provision is particularly acute in Aboriginal and Torres Strait Islander communities. While family networks in Indigenous society are highly valued and people with a disability are likely to be cared for at home by their extended family members, this means that younger carers may miss significant parts of their education.[51] In addition, a 2006 report by the Disability Services Commission WA raised a number of other challenges facing many Aboriginal people with disabilities and their carers, including: housing, poverty and high living costs in remote areas, lack of advocacy, reluctance to access government systems, problems with transport, lack of coordination between disability, Aboriginal and other support agencies, and lack of advice about employment opportunities.[52] Together these challenges are likely to make future planning extremely difficult.

5.57 The committee did not receive detailed evidence about Aboriginal access to disability / planning services during the inquiry. However, the committee did hear that Indigenous carers living in remote areas are unlikely to find appropriate services close to where they live. Mr Stephen Albert gave the example of carers in north Western Australia who need to travel to Broome to access good respite services, because the local services that do exist are only offered sporadically:

...carers who are out in the bush, if they are lucky and know the information, are able to try to go to this place of respite. I know that once a year in the Kimberley they try to get carers together and they might go to Kununurra for a big workshop where they can relax and work out how they can be better carers, or they might do one in the West Kimberley or somewhere in Fitzroy. Those things are happening but they are only once a year, sort of thing. The everyday thing about carers is that they do it themselves.[53]

5.58 While the need for better targeted service provision has been a common theme throughout the inquiry, Mr Albert, who described the system as a 'maze', suggested that it was critical that consultation with Indigenous families take place.[54]

Recommendation 10

As Aboriginal and Torres Strait Islander people with a disability face particular barriers accessing planning services, the committee recommends that the Office for Aboriginal and Torres Strait Islander Health undertake research to identify how planning support can best be provided to them.

5.59 Disability services are extremely difficult to access in regional and remote areas.[55] This affects both Aboriginal and non-Aboriginal people living outside metropolitan centres. The Australian Federation of Disability Organisations suggested that the support available in a given regional or remote area is unlikely to be appropriate for all the people with a disability in that area.[56] Therefore people with a disability and their carers must make an uncomfortable choice—either to access proximate care, which might be inappropriate, or move away from their social network to areas where they can seek appropriate care.

5.60 As well as facing limited options accessing specialist disability services, people in regional areas experience difficulties with transport to attend medical appointments and social events some distance away. The committee received evidence in Toowoomba that the expense of long-distance travel in taxis, combined with excessive waiting times and issues such as wheelchair accessibility, makes travel very difficult:

You have carers who no longer have licences and who are expected to take the person they are caring for to medical appointments and to all sorts of other things. They have to use taxis. Oftentimes they are 30 or 40 kilometres out of town. It is very, very expensive. It is not only that but also the distance from where they live to the support or service they are going to get. This came up, and it is really high on our priority list. It is one of the things that we will be putting in our recommendations—that it has to be addressed—because the carers just cannot keep footing the bill for this out of their allowances.[57]

5.61 The scarcity of transport has implications for access to appropriate services and for social and community engagement. The committee heard that bus travel is not an option for people with restricted mobility or for people who wish to attend events at times when bus services are not available:

Now if he wants to go out to Down syndrome disco at night or he wants to go to a movie or a concert or something special for the disabled that is on at night, he cannot go out. It would cost him at least $20 to get there and $20 to get home, which is $40 for an outing, so he cannot do it unless he relies on parents to go out there at night to do it for him...At 70 there is no guarantee I am going to continue to drive...That is a disadvantage to people who can catch a bus in the daytime but they cannot do anything at night because they cannot afford to do it on a disability pension. There are no buses at night here in Toowoomba, or on a Sunday.[58]

5.62 The committee heard an instance of a parent-carer who addressed this lack of services themselves through privately purchasing a maxi-taxi.[59] Parent and community driven initiatives are discussed further in Chapter 6.

Recommendation 11

As people with disabilities living in regional and remote areas face particular barriers accessing planning support, the committee recommends that the Department of Families, Housing, Community Services and Indigenous Affairs provide additional funding and resources to develop planning services in these areas. The committee also recommends that the Department establish a working group of people with disabilities, their carers and regional disability service organisations, to provide advice on how additional funding should be utilised.

5.63 The committee has identified the major barriers to future planning and made recommendations on information provision and access to financial and legal advice. In the following chapter, the committee examines ways in which community based, non-government organisations have responded to the demand for planning services.

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