Chapter 4

Need for lifelong and sustainable planning

4.1 As noted in its terms of reference, the committee seeks to assist carers find an appropriate answer to the question: 'What happens when I / we can no longer care?' or the attendant question: what happens when there is nobody to continue in a planning or quality monitoring role? In responding to these questions the committee proposes to examine future planning options that involve ongoing, sustainable, 'big picture' planning. Critical to such planning is the involvement of people who care, including friends, relatives and other members of the community, who can do what one disability support organisation in New South Wales referred to as: the caring about, and not just the caring for.[1] In this chapter the committee will examine the challenges faced by carers, the current life path of people with a disability and the need to establish planning cultures. This will be followed by a chapter which provides an overview of different planning models and which explores the types of assistance that could be provided to families to promote 'big picture' planning.

4.2 The committee notes that as people with disability are a large and extremely diverse group their planning needs are likely to be equally varied. For example, the planning support required for a person with a decision making impairment, be it an intellectual disability or a mental health disability, will be very different from that required by a person with a physical disability, who may be experiencing premature ageing. There will also be significant variation in the needs of different people within these groups. The planning challenges will also vary for Aboriginal and Torres Strait Islanders; for people from non-English speaking backgrounds; or for people living in rural and remote areas where there are inadequate formal support services.

Population ageing

4.3 As briefly discussed in Chapter 1, Australia is experiencing significant population ageing and it is anticipated that within the next decade there will be a considerable reduction in the levels of informal care and support available to people with disabilities.[2] The Australian Bureau of Statistics (ABS) recently released updated data on Disability, Ageing and Carers. This builds on data published by the ABS in 2003. It suggests that in 2009 there were 2.6 million carers who provided assistance to a person with a disability, or to a person aged over 60 years. This represented 12.2 per cent of the population. Just under one third of these (29 per cent) were primary carers; that is, they were people who provided the majority of the informal support. Over two-thirds of them, or 68 per cent, were women.[3]

Age of carers in Australia 2009—Numbers ('000)

Age Group	Primary carer	Not primary/ Other carer	Total carers
Less than 18 years	4.4	148.1	152.5
18–24	18.5	133.8	152.3
25–34	65.5	193.3	258.8
35–44	140.0	295.5	435.5
45–54	167.9	408.0	575.8
55–64	179.3	357.4	536.7
65–74	121.3	207.5	328.8
75 years and over	74.6	117.1	191.7
Total	771.4	1860.7	2632.1

Source: ABS 2009 Survey of Disability, Ageing and Carers[4]

4.4 These figures suggest that a significant number of the 2.6 million carers in Australia are over the age of 60—328,800 are aged over 65 and 191,700 are aged over 75 years. A further 536,700 are aged between 55 and 64. In examining the numbers of primary carers aged 65 or more we find the number at close to 200,000. While it should be noted that these figures relate to the number of total carers—people who provide assistance to older people and people with disabilities—these statistics reinforce the urgency of the planning challenge. They reinforce that in the next decade many carers will either die or find themselves unable to care. Therefore, as the size and capability of the informal care sector declines, it is essential that the community finds alternative ways to ensure the quality of support for people with disabilities.[5] Given that Australia is anticipating significant population ageing and there is expected to be a significant reduction in the amount of informal care support available, the committee is deeply concerned about the outlook for people with disabilities.

4.5 In October 2008, the ABS published A Profile of Carers in Australia. The report provides an overview of the characteristics of people who provide informal assistance to someone with a disability, or long-term health condition, or to a person aged 60 years and over. The report suggests that primary carers were often related to the person they were caring for: 42 per cent were partners; 26 per cent were children (caring for a parent); and 23 per cent were parents (caring for a child). The report also suggests that the most common reported reason for why primary carers take on a carer role was: family responsibility (58 per cent), carers feeling that they could provide better care than others (39 per cent) and emotional obligation (34 per cent). In addition, carers are reported to have, as a consequence of their caring role, lower incomes, lower labour force participation and lower levels of educational attainment than non-carers.[6]

4.6 In the above statistics, 23 per cent of all carers were identified as being parents who cared for a child. It is this 23 per cent, many of whom are aged over 65, who represent the most urgent planning challenge.[7]

4.7 In the consideration of one particular cohort of carers, mental health carers, the statistics are even more concerning. In referring to the Mental Health Carers Report 2010, the Mental Health Council of Australia provided the following data to the committee:

We had 765 responses to the carers report 2010, and I will give you a little bit of background of who these people were. They were all mental health carers. Eighty-two per cent of them were women, sixty per cent of them cared for an adult son or daughter and the average age of the carers was 58—that is the average. Thirty per cent of the carers were actually over the retirement age of 65, and 88 per cent of them were over the age of 45. We are talking about seriously ageing people. Sixty-one per cent of them said that the consumers had lived with them during the last 12 months. So we have a picture here of adult sons and daughters living at home with ageing parents or carers or a single carer. One of the most staggering figures was that 77 per cent of the respondents said that they were responsible for the day-to-day integration of any sorts of support systems for the person they cared for, whether they lived at home or lived out of home—not social services, not PHaMs [Personal Helpers and Mentors Program] workers but the carers themselves.[8]

4.8 The Mental Health Council of Australia also explained that these carers are seriously concerned about the lack of options to assist with accommodation and care and, by and large, remain unprepared for the time when they can no longer care.[9]

Challenges faced by carers

4.9 While the ageing demographic and the anticipated reduction in the number of informal carers suggests the need for planning services, evidence taken by the committee indicates that many people are so consumed by their day-to-day caring role that they have not even begun to start thinking about planning.

4.10 There may be other reasons why planning is not taking place. Some carers may even deliberately avoid planning as they are unable to come to terms with the prospect of living without a dependent child. Some are concerned about their capacity to cope emotionally while others are concerned about their capacity to cope financially. Other carers find it difficult to acknowledge their own mortality and therefore struggle with the gravity of the question: 'What happens when I can no longer care'? [10]

4.11 Further, a large portion of the disability community is not currently involved in any type of formal planning process.[11] In referring to the reach of disability service organisations involved in planning, Dr Ken Baker, National Disability Services, suggested:

Many disability service organisations are involved in planning with clients and their families, but there is a significant population of people with disability and carers who are only marginally involved with services, or not at all involved.

In 2007–08, 245,000 people received some form of support from specialist disability service funded under the CSTDA (now National Disability Agreement). Many of these people—particularly those receiving accommodation support and community access services—are engaged in regular (usually yearly) planning. When done thoroughly, this planning involves families and informal carers as well as the person with disability and it considers longer-term future needs as well as developing a plan for the coming year or so. Families with ageing carers often need additional assistance to start putting in place arrangements in preparation for changed circumstances into the future.

About two-thirds of the potential population (people with severe or profound disability aged under 65 years) do not currently receive any form of specialist support services. While they may receive some services, such as HACC or respite, they will typically miss out on regular and detailed planning processes that identify future as well as current needs.

Of particular concern are the people with disability who first come into contact with the service system at a time of crisis. They are not connected with any services and may find the sudden engagement with unfamiliar people and places very disconcerting. Carers of these people, if they can be identified, will often need significant support and encouragement to have in place emergency plans as well as plans for the future.[12]

4.12 Dr Baker's evidence offers some explanation as to why planning is not taking place. It suggests that the large number of people who operate outside the specialist support network—two thirds of the population of people with severe or profound disability—are only coming to the attention of the disability support organisations when they reach the point of crisis. They are therefore not being encouraged to undertake planning until it is too late.

4.13 Yet it is not simply that people with disabilities and their carers frequently operate outside the formal service system, but many carers have lost confidence in the capacity of the system; others have disengaged as a result of the lack of formal planning mechanisms. These people need information and support to understand and manage what is a complex process, and to be reassured that there is value in planning.

4.14 In Melbourne the committee received evidence from Ms Lesley Baker. Ms Baker's evidence is compelling for it offers a snapshot of the day-to-day challenges faced by the carer of a child with complex care needs. It is useful to quote Ms Baker's evidence at length because it demonstrates that many parent-carers do not have the time to plan; it illustrates the social isolation that is often experienced by parent-carers, while also articulating the concerns that parent-carers have for the future:

In January I will be 67 years old. I am the sole carer of my 33-year-old intellectually and physically disabled son, Benjamin. I have been his sole carer since his father left when he was 18 months old...[Ben] does not speak and he displays some autistic tendencies. He can walk but not for distances, so he requires a wheelchair outside home. He also suffers from chronic sleep apnoea and he is one of the worst recorded cases worldwide. He requires 24-hour supervision and care which means virtually I toilet him, bathe him, feed him, dress him, teach him, entertain him and do everything else. He cannot be left alone in the house at any time and I have to sit next to him at night when he is going to sleep to watch for obstructions with the sleep apnoea. With all of that he is the most delightful young man with a whimsical sense of humour and he adores people.

He attends a day training centre five days a week. He leaves around 8.15 and gets home at four. He enjoys his life. He is very happy at the centre with his peers and his special workers and he enjoys coming home for tea, activities and bed...The rest of the time I am on my own. I have the eight hours a day that he is away to do everything else, household chores, household maintenance, gardening, banking, cooking, shopping, maintaining his accounts in accordance with VCAP [Victorian Carers Action Plan] requirements, meeting with support workers and agencies, constantly updating the endless paperwork...

I do get one night a week to possibly go to the movies and, if I do go, I go alone. Older friends have drifted away because they now have their retirement and their grandchildren to look forward to. My parent friends are equally confined to barracks. Most of my social interaction is with the carers who come in to look after Ben. I have had a rotating workforce of literally almost hundreds of carers over the years, so it is hardly surprising I live basically in social isolation. Caring for Ben has also taken a physical toll. I am currently on the waiting list for a complete shoulder reconstruction but I am on the list behind a lot of people who can afford private health insurance and who have no-one waiting for caring. However, I will not be able to have that operation unless I can find the funding for care for Ben during my rehabilitation.[13]

Certainly, for those of us who are caring for adult children still at home there is no retirement date, there is no superannuation. We gave away our careers and money many years ago. Our reward for years of care really is the agony of wondering what the hell is going to happen to them when we are no longer around...I am the only one who can interpret what Ben wants, what he needs or is comfortable with, and what he is afraid of...

The future for both of us really cannot be taken any further than the fact that I will be at home this afternoon to get him off the bus. Despite being 12 years on the urgent needs for housing list, he has never had an offer and there is no reason to suppose he will get an offer within the next 12 years because of a massive shortfall in housing. When the call does come from an impersonal voice we will be given an address and a contact phone number for a house that we will not be familiar with nor with any of its occupants. We will just be given a date and have to take it from there...

Intellectual disability does not mean stupidity. It does not mean anywhere will do. He has got the same hopes, likes and fears as any other young man. He just cannot express them clearly. But one thing he does not have is a concept of the future. He has no concept of death or loss or that some day he will be without me. It is impossible to inform him that one day he will live with other people and that on another day I simply will not be there.[14]

4.15 Ms Baker, like many contributors to the inquiry, have suggested that parent-carers are so consumed by their caring responsibilities that they have little opportunity to start thinking meaningfully about the future.[15] This combined with the fact that it is extremely difficult for carers to access respite, means that many carers have not had the opportunity to begin to think about planning. The lack of future planning by parent-carers, their lack of energy and resources, is poignantly represented by Ms Baker's statement that the sense of the future is confined to being available to get Ben off the bus.

4.16 Parent-carers such as Ms Baker often see support workers come and go but feel that it is the parent alone that understands and advocates for the needs of the child with a disability. The parent-carer therefore becomes both the primary advocate and the repository of all the information about the needs of the person with a disability. Other submitters to the inquiry have explained how this may further detract from the establishment of a planning culture. Down Syndrome New South Wales referred to problems associated with a parent retaining all the knowledge of an individual's care needs:

As parents, we are not very good at keeping records of what we have done. As the mother of a person with a disability, you are the boss of the game, you keep it all in your head and you keep it going. When you are not there, who knows what you have even tapped into, what has been explored before and what has not? That is something else that we should perhaps be talking to parents and families about—keeping better records, in whatever format, of what the person's needs are and how they are actually being met on a day-to-day basis rather than just letting mum take care of it so that, when mum is not there, nobody knows where to start and it all has to start over again.[16]

4.17 Evidence about the social isolation Ms Baker experiences as a result of her care commitments was also reinforced by other witnesses. Life Without Barriers expressed concern about the mental health of both socially isolated care providers and older people with disability living with parent-carers:

There is a great deal of depression and mental health issues in the population of older people with disability who reside at home with their parents. And, more broadly, older people with a disability do experience greater issues around mental health. Often parents are suffering mental health problems as well. Often this is due to isolation experienced by these family units.[17]

4.18 Against this backdrop of social isolation and depression, it can be difficult for carers who have spent decades caring for a person with a disability to begin to consider future planning options. To do so requires carers to contemplate a situation whereby they are no longer the primary carer for their son or daughter, and further, that at some point they will die and there will be no choice in the matter—the person with a disability will need someone else to care for them. Issues around personal mortality are particularly difficult for carers who have spent their own lives keeping someone else alive and well. As Dr Ken Baker explained:

What has been striking not just from the Anglicare Sydney study but from an earlier study of maybe five years ago by Scope Victoria is the extent to which people overestimated their capacity to continue a caring role long into the future. People well into their 70s are anticipating in the Scope study that they can continue to care for another 20 years.[18]

4.19 Other concerns carers may have with respect to future planning relate to feelings of guilt relinquishing the care of a person with a disability and loneliness following the departure of a family member from the family home.[19] In some cases, carers of people with an episodic mental illness might find future care planning particularly confronting when what they actually hope for the future is that the person will recover.[20]

4.20 Ms Baker's account reveals the complexity involved in planning for someone with a decision making impairment. For while it is clear that people with intellectual disabilities remain heavily reliant upon the parent-advocate, they may well be capable of participating in decision making about their ongoing support and representation. However, in Ben's case, his involvement in the planning process may be limited by the fact that he has no concept of the future.

Life path for people with a disability

4.21 The current life path for a person with a disability is, in most instances, very different from a person without a disability. People with disabilities rely heavily on parental support; spend more years in the family home; may not participate in the workforce or, if they do, may require additional support; and they may retire from employment earlier than others.

4.22 As documented above, many people with disability continue to live with their parents or family until the family no longer has the ability to care. Life Without Barriers expressed concern about the way that this affects the independence, and decision making capacity, of the person with a disability in ways which may ultimately affect their capacity to plan:

In many ways people remain essentially stuck in a childlike or adolescent life stage instead of developing the emotional, psychological, financial and functional skills to be as independent as they can be to make their way in the world without their parents and vice versa, for their parents to make their way in the world without their children.[21]

4.23 While this comment suggests relationships of co-dependency it also suggests that future planning options need to emphasise transition planning to assist people with disability effectively negotiate the various life stages—moving out from the family home, finding employment, and retirement from employment.

4.24 While it would be useful to be able to normalise the moving out of home experience for people with disability, any current attempt to engender independence is undermined by a lack of services, accommodation and employment prospects. For those able to work, employment provides the financial independence necessary to assist people plan for the future and potentially move out of the family home. Without it, people with disability are reliant on either informal support or the housing support system which, as we have seen, has very long waiting lists. Additionally, people with disabilities who are employed may find it easier to access other supports like aids and equipment. Nevertheless, in spite of the obvious benefits of employment, evidence provided to the committee suggests people with disability may find themselves unable to find work, not as a result of any inability to participate in the workforce, but because of the limited opportunity.[22]

4.25 For those who do participate in the workforce, transitional life planning also needs to be undertaken for people seeking to retire, particularly those retiring from Australian Disability Enterprises (ADEs). Clearly people ageing with a lifelong disability have distinctive needs in relation to retirement. Mai-Wel, a disability service providers in the Lower Hunter region, outlined what is involved in retirement placing for people with disabilities:

Obviously retirement planning is very important for an organisation that has over 100 supported employees. We acknowledge that for all employees, as for all other employees in the community, there needs to be some planning process in place. We also acknowledge that for people with a disability this may well be a staged process, beginning with the development of a retirement plan and then having a number of steps until retirement finally takes place and there is an exit from the workplace. There are things like sampling of retirement options. If you have been in an ADE or an Australian business enterprise for 40-odd years, you really do not know what options are out there, so there is sampling of those. There is also reducing their work hours so that they can access a generic or disability-specific day program. We believe that the federal government has some role in this. At the moment they do not give us funds to be able to assist supported employees down the retirement process, and I think that is something that they could do by way of releasing the older supported employees to be able to access some of those options.[23]

4.26 The committee heard that it is currently very difficult for people with disabilities to retire because there appears to be a complete lack of post-retirement support. Suggesting that almost 50 per cent of the people in supported employment are going to be aged over 50 in the next five or six years, Professor Christine Bigby suggested:

It is also going to affect the quality of life of those people who want to have less of a stressful life and may want to retire. At the moment, it is very hard to retire. People see it as an enormous risk because they may be left at home with no support to swap work for more meaningful activity of their choice.[24]

4.27 Even more concerning was evidence provided by the Mai-Wel, which explained that they have 12 supported employees who are depending on fundraising for their retirement.[25]

4.28 Beyond the difficulty of managing the transition for each of these life stages there is no sense that there is any effective planning system enabling a person to feel, with any confidence, that he or she can negotiate moving through the traditional life stages. People with Disability Australia pointed to the lack of cohesion:

We have had a number of governments working very hard over a number of years to set up responses to people with disability, but there is no cohesion to those responses. There is no sense that I would imagine, beginning life as a person with disability, that I could see my way forward all the way through to old age, knowing how things are going to be laid out for me, how I am going to have opportunities for education and employment, where I am going to live when I choose where I want to live, those kinds of things.[26]

4.29 In short, there is too little support available at each transitional life stage let alone any support that resembles an integrated and cohesive life plan. The committee would like to stress that managed transitions are particularly important for people who may find unpredicted change difficult, such as people with intellectual disabilities.[27]

Recommendation 2

The committee considers it critical that effective planning support be available for people with disabilities transitioning from education to employment and from employment into retirement. The committee recommends that the Department of Families, Housing, Community Services and Indigenous Affairs provide retirement planning support options for people employed in Australian Disability Enterprises.

Premature ageing for people with physical and intellectual disabilities

4.30 In considering the current life path for a person with a disability it is also important to recognise that some people with physical and intellectual disabilities age prematurely. Evidence suggests that the use of chronological age for determining eligibility for access to specialist aged care services has proved a significant barrier for people with physical or intellectual disabilities.[28] The committee heard from several witnesses affected by either cerebral palsy or post-polio syndrome who experience early-onset ageing. The stress on muscles and bones that people with these conditions experience often results in osteoporosis. Further, those confined to wheelchairs often experience poor circulation and reduced muscle tone in the legs which can result in other muscular-skeletal problems. Other disability groups also have degenerative conditions that require them to access specialist aged services, among them, people with intellectual disabilities, and in particular, people who experience early-onset dementia. People with intellectual disabilities are one of the largest groups of people who will have early-onset dementia because of the connection between Down syndrome and dementia. Professor Christine Bigby offered the following comment:

I think that one of the issues is that this is a unique group of people who are ageing with a lifelong disability. They have very different characteristics from a lot of older people, they are a very small minority potentially within the aged-care system, and at the moment there is a policy vacuum because nobody wants to take the responsibility for this group of people.[29]

4.31 The committee raised concerns about access to aged care services for people affected by cerebral palsy or post-polio syndrome with the Department of Health and Ageing. The department explained that they were not aware of access problems for those who had acquired a disability as a result of polio or for those with cerebral palsy.[30] However, the department suggested that if people are experiencing need to access aged care services they would be able to undergo an assessment processes:

The agreement that was established back in the late 1990s with the states and territories around people under the age of 70 accessing community care or residential care will remain in place. If it is agreed there are no other facilities or care services more appropriate to meet the person's needs then that is when an ACAT [Aged Care Assessment Team] assessment is the most appropriate assessment and that is the pathway to community care or residential care.[31]

4.32 Despite the reassurance of the department the committee received evidence suggesting the assessment process is not operating as seamlessly in the community and that people with premature ageing were experiencing difficulty at the disability and aged care interface:

It is also very hard for people who have intellectual disabilities—who have, for example, Down syndrome and are ageing prematurely and have dementia—to get access to high-quality aged-care assessments, aged-care clinics and geriatric medicine. Because of the age barriers to those services, they are stuck at the interface. There are protocols that say you should not use aged care unless it is the last resort, so people get batted backwards and forwards between the disability system and the aged-care system. As a result, some people die prematurely. They do not get the type of treatment that they should have.[32]

4.33 The Department went on to explain that someone in their forties with advanced dementia, for example, may receive an Extended Aged Care at Home (EACH) dementia package or may be admitted to a residential facility. The Department also assured the committee that they are aware of the difficulties that people with premature ageing experience navigating the interface between the disability and aged care systems:

We acknowledge that it is a complex system. The feedback you have received to your inquiry is consistent with what people have said to the Productivity Commission and elsewhere. This is a complex and difficult system to navigate at times. We have significant effort under way to actually improve the way people get information around how they are assessed, how they are referred. We also did a big round of consultations with people around the country prior to Christmas in terms of the work we are doing on one-stop-shops. It is also consistent with the feedback that has been provided in those sessions. People are comfortable that the initiatives we have under way are the ones they think are needed.[33]

4.34 Numerous submitters suggested that assessment of need should be based on new criteria. The Victorian disability services organisation Scope suggested:

[Scope] would call for criteria that are based on functional changes for that individual but also on the perceptions of that individual and the people who care for that individual in terms of how they are ageing and what impact ageing is having on them. So there should be a combination—functional criteria and criteria based on perceptions.[34]

4.35 Others solutions included identifying this group of people as a unique group who are likely to need aged care services at an earlier age, such as age of 50 or 55 (Mai-Wel suggested that for people with Down syndrome, a more appropriate age would be 40).[35] This would prove an appropriate way of setting the aged care threshold or interface for people with disability, making sure appropriate services are accessible to them when they have the need. Professor Christine Bigby suggested that, from an administrative point of view, this was relatively easy to do if you do it on a fee-for-service basis that allows the disability system to purchase into the aged-care system when it is absolutely necessary.[36] For these disability groups the policy frameworks should provide additional flexibility to enable providers to categorise people according to need rather than age.

Committee view

4.36 This evidence suggests that there are problems associated with using chronological age to determine eligibility for access to specialist aged services. This has significant implications for people with physical and intellectual disabilities. The committee notes that Aboriginal and Torres Strait Islanders have been identified as a category of people who age more quickly than other members of the population. It therefore considers that there would be benefit in also identifying people with disabilities as a group who age earlier.

Recommendation 3

The committee recommends that the government look to identify people with disabilities as a special group who may age earlier than other members of the population and should therefore have access to a range of aged care services at an earlier age.

Recommendation 4

The committee recommends that the Department of Health and Ageing review the assessment tools used by the network of Aged Care Assessment Teams (ACAT) to take into account the needs of people with a disability who are ageing prematurely.

Establishing planning cultures

4.37 Planning is a complex and multifaceted task that requires knowledge and expertise. It requires a comprehensive understanding of the disability service sector, funding arrangements and housing and support options. Above all, individuals involved in planning need to know where the relevant information is available and how this information can be accessed. Planning is also a consultative process and involves discussion with the person with a disability and other significant people. Numerous other witnesses referred to planning as a long process that develops over time. Family Advocacy suggested that 'Planning is not a one off event—it occurs slowly over time'. Moreover, that while it is never too late to plan, 'everyone's quality of life is enhanced the earlier they are helped to develop a vision and put plans in place to realise that vision'.[37] It is also imperative that planning cultures are predicated on understanding the distinction between life-long planning and service planning.

4.38 There are also aspects of planning that require an understanding of legal and financial planning. Carers Victoria referred to the challenges that carers face trying to understand legal and financial issues:

For financial planning you need to understand families 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.[38]

4.39 While service provision is critical to planning, and services contribute to the wellbeing of the individual, Professor Christine Bigby spoke to the committee of differentiating between life planning and service planning. In so doing she reemphasised the distinction between caring for and caring about:

The sense is, I think, that we need to think about what we are planning for, and I think it is useful to think about planning to care about a person and planning to care for a person. You can replace some of the roles that parents have done by planning to have other people to be involved in somebody’s life—other people who care about them, who are committed to them, who are not part of the service system, who can act in an advocacy role, who can negotiate with services and who can negotiate flexibly for change as a person's situation changes. Where somebody lives and the type of support they get will change over time and cannot be locked in at one point in time, so planning has to be flexible, and the way to achieve that is to have people involved your life.

There are issues, too, around preparing for that separation, helping people to develop skills, to develop independence, so that they can easily separate from their parents while still maintaining, clearly, a relationship with them and other family members. The planning has to think about preparation for that separation as well as where somebody might live in the future.[39]

4.40 Pave the Way reinforced the importance of planning outside the service context through drawing on the distinction between family and external services:

Pave the Way strongly believes that planning in the context of parents or other important family members aging is vastly different from service planning. This is planning for a safe, secure and meaningful life in which services may or may not play a role. This is planning that families must drive and control. This is 'whole-of-life' planning and is in the realm of family business, not service business.

Direct support services can play a role in assisting individuals to achieve some goals, for example, those concerning home, work, recreation, communication and education, but are unlikely to play a role in many other aspects of the individual's life, such as personal security, financial security, decision-making, relationships and friendships, health, spirituality and developing individual passions. Even where services do play a role, they are unlikely to be the only factor in assisting an individual to achieve a particular goal. For example, supporting a young person with disability to live in their own home might involve a mix of paid support, unpaid support and financial contributions by the individual and/or their family. Services can assist people to have a good life; they do not constitute a life.

All services do some sort of planning with the people they support, such as 'individual education plans', or 'individual program plans', or 'family support plans', but that service planning is limited to what the service can do within its purview as a service provider. Service planning is very different from the whole-of-life planning relevant to planning for the future.[40]

4.41 Numerous submitters to the inquiry have offered suggestions as to how whole-of-life planning may be done. These have included:

The development of wills and estate plans to define how property and assets should be distributed;
Appointing Powers of Attorney and Guardianship or developing an Advanced Care Directive;
Considering the establishment of trusts such as a Discretionary Trust or a Special Disability Trust;
The development of emergency care plans in case of sudden parent illness or death and sharing these with the person with a disability and other key people;
The development of succession plans or arrangements for medical, financial and lifestyle representation. This will ensure that a trusted person can oversee the ongoing care and support needs of the person with a disability, and advocate for housing and support services consistent with family wishes. Such plans will also be interpreted to the person with a disability;
Creative use of respite and recreation programs to explore and practice eventual separation;
Transition planning to housing and support outside the family home will also be required. To this the committee would add the importance of assistance with transition planning to assist families manage different life stages.[41]

4.42 In the following chapter the committee will offer an overview of the major impediments or barriers to planning before then examining some mechanisms for formal succession planning. It will examine the way that the involvement of significant people in the life of a person with a disability, who have ongoing responsibility in supporting and assisting them, can be an important mechanism for families whose sons and daughters no longer live in the family home. In so doing, the committee stresses that that there is a need for a cultural change acknowledging that it is the responsibility of the community—not just the family—to provide support for people with disabilities. Or to restate a comment provided by Ms Melissa Young, Perth Home Care Services: '...this is not a disability issue, an ageing issue or a carers' issue. This is a personal and community issue for us all'.[42]

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