Chapter 6

Current lifelong planning and support schemes

6.1        In Chapter 4 the committee outlined the urgency of the planning challenge. It suggested that as a result of population ageing it was essential that planning be developed to support ageing parent-carers and people with disabilities. Effective planning, the committee argued, would minimise crisis responses, provide reassurance for family and friends, and would assist people with disabilities transition through the different life stages. The committee also discussed the fact that planning is a complex and multifaceted task that involves families marshalling a wide variety of information related to funding arrangements and the disability service system, housing and support options and guardianship and financial matters. In this chapter the committee turns to consider some of the innovative planning work that is currently being undertaken by non-government organisations and makes recommendations on what the government can do to assist these organisations continue with this important work. In making these recommendations the committee considers that while it is important that government provide the frameworks to underpin or facilitate planning, it is the community-based organisations, people with disabilities and their carers, operating at the local level, that are best positioned to develop and deliver lifelong planning support.

6.2        Earlier in the report the committee sought to differentiate between individual service planning and whole-of-life planning. Professor Christine Bigby suggested that while support services can play a role in assisting individuals achieve work, recreational or educational goals, these services are unlikely to assist with matters such as personal or financial security, decision making, relationships or goal setting.[1] In order to make this distinction clear, it is worth citing Pave the Way's description of the whole-of-life planning work that exists independently of service planning:

People may put plans in place thinking that that is the final solution for their son or daughter, because a place has been found, a roof over their head has been found but we all know that circumstances may well change in that regard with a change in services or a change in legislation. So people need to have in place some thinking in their planning that lies beyond or beneath service planning. That is where the work of Pave the Way comes in, which is not to say that the funding and services are not very important. But there is a question about planning that lies beyond that, which is: who are the people involved in knowing my son or daughter and being there to bear them in mind in the future?[2]

6.3        Ms Belinda Epstein-Frisch, Family Advocacy, New South Wales, offered another rationale for planning. This relates to the limited social capital established by families who care for a person with a disability. Ms Epstein-Frisch suggested that many people with disabilities have fewer opportunities to build the types of connections that assist people negotiate 'life steps', such as leaving school, finding a first job or moving out of the family home. As discussed earlier, this is exacerbated by the fact that carers of a person with a disability are frequently socially isolated and may also have limited social or community connectedness:

When you think about it, for the vast majority of us, as we have taken our life steps—our first job, finding a place to live and who you live with—it is about our connections. It is about the people you know—your mother's sister's best friend who helped you to get that job.

People with disability, because of the restricted opportunities that many face, have had far fewer opportunities to build those connections. So the first step—and it is a step in planning—is helping the family to bring other people into their intimate circle. It is about saying, 'I'd like you to help me think about Robert. I'm worried.'[3]

6.4        The committee has heard many inspiring stories, frequently told by parent-carers, documenting the work taking place in the community to support people with disabilities and their carers. Across Australia there are pockets of people doing extraordinary work, often voluntarily, because they see the need. The committee heard of disability advocacy groups who have established 'supported living funds' or 'circles of support' to assist with the future care of their disabled adult child; parents in Sydney who are setting up an 'intentional community'; a group in Gunnedah who established a rehabilitation day program for mental health consumers; a group of parents in Toowoomba who organised a letter campaign, successfully advocating for funding to establish a house for shared accommodation—the Anden; and an individual in Hervey Bay who has organised the council to provide accommodation where she can support mental health consumers in living independently.[4] While it should be acknowledged that some of these initiatives have received some government funding, many are established by parent-carers and are taking place independently of government.

6.5        Many of these grass-roots level, non-government initiatives have emerged in response to the lack of government support, or from the cumulative frustration of dealing, over many years, with complex and confusing government bureaucracies. Others have emerged in response to service support which is often piecemeal or where there is an absence of ongoing case management. Above all, these initiatives, frequently parent-run, have emerged in response to the frustration of dealing with bureaucracies that are simply not responsive enough, inventive enough or flexible enough to meet people's complex needs.

6.6        Individuals involved in establishing these organisations suggested that one of the challenges they confronted was rejecting the culture of dependency that has developed among families reliant on the disability service sector. Ms Epstein-Frisch suggested that families needed to regain their 'family authority' or decision making power:

The way in which our system has worked is that people have been rewarded and encouraged to go into crisis. People who are, say, my generation—families in their forties and older—were taught that the service system will provide you with the answers and that you should wait and get services et cetera. They have been taught to give up important family authority and decision making to a service system. That has immobilised them in their capacity to plan. How can you plan when so many of the answers seem to be completely and absolutely outside of your control?[5]

6.7        Others spoke to the committee about dispensing with the culture of learned helplessness, and looking beyond government:

We are aware that the government cannot and will not provide all and that sometimes doing things yourself brings about really good outcomes for the person with the disability and their family. So I guess it is about changing attitudes as well as the work that we do.[6]

6.8        In what follows the committee offers a profile of some of the non-government organisations involved in planning. Thereafter, it seeks to consider some of the critical planning concepts that emerge out of the work of some of these organisations.

Organisations involved in long-term planning

Planned Individual Networks

6.9        Planned Individual Networks (PIN) is a Perth-based organisation modelled on the Canadian Planned Lifetime Advocacy Network (PLAN). It was formed after a group of parents did PLAN training and then established their organisation on the PLAN model. PIN is 'a family leadership initiative' whose goal is to develop individual networks to offer long-term planning support to a family member with disability. Chairperson of PIN, Mrs Lorraine Hitt, described the network that families look to establish as a 'bike wheel':

The easiest way of explaining the network is if you think of a bike wheel. The person at the centre is the person with a disability. That is the hub of the wheel. The spokes are the people who freely form a relationship with the person at the centre. It may be family, it may be friends, it may be neighbours or it may be somebody that one of the family members has a connection with but who has shown an interest or has similar goals and interests. The areas that people can look at particularly are friendship and social contact because people are quite isolated when they have a significant disability. The other areas families are quite concerned about are financial advocacy, medical advocacy and planning. Often a family member—and most often the mother—will take this on. If you have got a number of people in the network then the role is shared and supported, so the challenge is not so great.[7]

6.10      The networks provide a holistic approach to social, financial, planning and medical care and could be described as also being engaged in a coordination and quality monitoring role. To date, PIN has established 25 networks.[8]

6.11      PIN also runs Safe and Secure Workshops for Families which introduce families to planning for the future. These cover subjects such as: building relationships, home and lifestyle options, estate planning, wills and trusts, and supporting participants to become informed about life insurance, income protection, and trauma and accidents. In addition to the workshops, PIN holds quarterly orientations for which it does not charge.[9]

6.12      PIN was established with grants from Lotterywest. It has received two grants from the Disabilities Services Commission, Western Australia. Currently it has no recurrent funding and operates as a fee-for-service provider or survives on donations, membership fees and fundraising. Mrs Hitt described one of the challenges facing the organisation is that it does not have the funds to support a chief executive officer who could potentially assist the organisation grow.[10]

Pave the Way

6.13      Pave the Way is a team within Mamre Association in Queensland. The Mamre Association is a family support service based in Brisbane. Pave the Way began in September 2002 as a small project funded by Mamre Association, before receiving funding from Disability and Community Care Services in the Queensland Department of Community Services. Pave the Way is funded to provide succession planning resources and support to families throughout Queensland who have a family member with a disability.  The aim of Pave the Way is 'to assist families with a family member with a disability to develop a vision for now and the future, to plan to implement that vision and to safeguard that vision...in the long-term'.[11] Pave the Way stresses that it works with families, not for them. It focuses on vision building and future planning issues, not case work, advocacy or service development.[12]

6.14      Pave the Way is the only project in Queensland which focuses on whole-of-life planning on a state-wide basis.[13] Pave the Way operates on the following principles:

• It is never too early or too late to plan;
• Future planning begins with developing a clear vision for the best possible life we can imagine;
• There is no template or recipe—every family will create their own vision and plan, at their own pace;
• People keep other people safe—inviting others to share our vision and our planning is one way to help secure our hopes for the future.

6.15      In keeping with the perspective that people keep people safe, Pave the Way encourages families to develop networks of support, including support circles, around their family members. Pave the Way assists families to establish these networks or circles and acts as a resource for families who want to come back for further assistance when they need it.

6.16      Beyond supporting the development of networks, Pave the Way offer one day workshops and two day and six day live-in workshops which provide in-depth opportunities for families to focus on future planning.[14] Pave the Way also provides information and guidance in relation to legal issues relevant to planning and preparing for the future, including Special Disability Trusts. Pave the Way refers families to a panel of solicitors in Brisbane and throughout Queensland who are experienced in wills and trusts and with working with families who have a family member with a disability.[15]

Future Living Trust

6.17      The Future Living Trust provides services to people with developmental disabilities and their families. Based in Perth, the Trust is an incorporated body founded in 1989. Future Living Trust's mission is to provide a means for families to make reliable plans for the future and assist in the implementation of those plans. Future Living Trust does not provide whole-of-life planning but offers specialised, boutique planning services to assist parents with wills, trusts and estate planning and has formulated specific policies to deal with the legal complexities involved in these matters. It also engages in planning and advocacy work to assist ageing carers access funding, respite and support services and to develop individualised care plans.[16]

6.18      The Future Living Trust is a not for profit, non-government funded charity. In its submission, Future Living Trust explained that as a charitable Trust, it is restricted in the number of parents it can assist as the types of advice services it provides are not funded by state disability services organisations or FaHCSIA in any way.[17]

Perth Home Care Services and Vela Microboards

6.19      Perth Home Care Services (PHCS) is a not-for-profit organisation established in 1967. With an annual turnover of $36 million, and 850 staff, they are developing individualised care and planning solutions. PHCS supports 1,200 people per fortnight, including over 300 people with individualised disability support.[18] PHCS provides assessment, case management, crisis care, domestic assistance, nursing consultancy, respite, social support and personal care. These services are provided to people with disability, those who are aged or those who have mental health issues across the Perth metropolitan area, as well as the Midwest and Wheatbelt regions of Western Australia.[19]

6.20      Since 2007 PHCS has been funded by the Disability Services Commission, Western Australia, to promote the use of Vela Microboards. Vela Mircoboards Australia (VMA) describe a microboard as a:

...small (micro) group of committed family and friends (board) who join with a person who has life challenges to create a non-profit community board. The Microboard supports the person to plan for a good life and to achieve their goals, dreams and wishes.[20]

6.21      As with a PIN network, membership of a microboard is voluntary and people freely give their time and support. VMA is modelled on Vela Microboards British Columbia where it has been operating for approximately 16 years and there are now 1,600 boards established.[21]

6.22      Sharing similarities with the notion of the 'bike wheel' network, described by Mrs Lorraine Hitt of PIN, each microboard supports one person, the person is the centre of their microboard, and every decision reflects the person's goals, dreams, needs and desires. Importantly, like the PIN network model, these are 'self-organising' groups committed to planning, advocacy and support. The important feature of these networks is their inbuilt sustainability for in order for a member to leave the board a replacement has to be found.

6.23      Mircoboards may be established as companies or as incorporated associations and may manage funding or individualised supports and services for a person who needs them.[22] They also include arrangements for governance, accountability and quality of service.[23] PHCS explained to the committee that in late 2010 they had two, almost three, microboards that had been formally constituted and that they anticipated that there will be more over the next few years.[24]

6.24      Importantly, for those people who may not have anyone to form a circle of support and may not know anyone particularly well other than their service providers, the network or mircoboard models are able to connect them to people to help support them at vulnerable stages of their lives.

Other organisations involved in planning

6.25      The committee heard from other disability advocacy groups that have created other types of planning models. For a number of years Family Advocacy (NSW) has been holding workshops, information sessions and teleconferences to promote 'supported living funds'. Ms Epstein-Frisch compared the supported living fund to the networks established by PIN, explaining, 'there should be a network of people who care about the person...rather than care for the person'.[25]

6.26      Ms Epstein-Frisch also referred to some examples of the important planning work that is taking place within the Jewish community:

...there is little project that we have had going there for about four to five years, a circles project. It is tiny. It has grown. We got funding from within the Jewish community, so it is not funded from government. There are eight families who are assisted to plan. Last year we spent $8,000 on eight families over a full year. That provides for a coordinator and some very part-time sessional facilitators. It gives us the opportunity to select different facilitators. It is nobody's job but there are a lot of people who have that kind of knowledge, skill and empathy who are very happy to be involved.

So what that does is provide someone external to the family who works with the family to facilitate—to perhaps get it started, to do that initial ask and to facilitate the meetings. Sometimes the meetings are once a month and sometimes they are once a quarter...[26]

6.27      Witnesses representing Futures Alliance (NSW) also introduced the committee to the work they were doing to establish an 'intentional community'. Drawing on the example of Deohaeko in Canada, they explained how this was based on the creation of informal and formal supports: formal support from a disability provider and informal support from residents within the 'intentional community' and from brothers, sisters, cousins and family friends who form circles of support.[27] The committee also received evidence from peak bodies like Carers Victoria who have developed planning programs and support services and who have advocated for the appointment of guardians or administrators to oversee the affairs of people with disability.[28] Life Without Barriers, a not-for-profit organisation providing care and support services in urban, rural and remote locations, also informed the committee about the person-centred planning they offer, through which specialised coordinators develop individual plans.[29]

Establishing sustainable networks

6.28      There are a number of planning concepts that are common to each of these planning initiatives. While there may be some variation in emphasis between the different models, be it the network, the microboard or the circle of friends, each gives emphasis to the same planning concepts. These include:

• Respite and readiness;
• Individualised or person-centred care;
• Relationship building and family involvement;
• Establishing sustainable networks;
• Role of paid facilitators.

6.29      In addition, each of these models acknowledges the challenges associated with any planning process. In the previous chapter the committee identified carers need for respite and the lack of respite service was identified as a barrier to planning. In acknowledgement of the need for respite, Perth Home Care Services have created the 'Time Off and Planning' (TOP) initiative to enable families to start to think about planning. The target group for the service is family carers of people with permanent disabilities and priority is give to carers who are aged 65 years or over. Previously funded by both the Commonwealth government and the Disability Services Commission Western Australia, it provides carers with access to a coordinator who discusses with the family their care needs in relation to time off, planning, emotional support, information and advocacy. Carers are then encouraged and supported to plan for the future.[30]

6.30      The committee believes that the provision of respite services is integral to planning and suggests that organisations involved in planning make special provision for respite within their planning models. However, given the committee's previous discussion on the availability of respite, it acknowledges that until opportunities for respite improve, this will continue to be extremely difficult.

6.31      Another critical aspect of the planning journey is taking into account the concept of readiness. Several planning organisations emphasised to the committee that it is not uncommon for a family to attend a series of preliminary planning workshops, but still not be ready to embark on the planning journey:

It is not an uncommon experience for us to have a family say after they attended a workshop, for example, two years ago: 'I know that stuff is really important. Now I am ready and now I am here to have that conversation.'[31]

6.32      This was reiterated by PIN who suggested that it often it takes families a long time to grasp the need to plan and prepare.[32] Another factor affecting readiness is that planning can often be personally confronting because it requires parent-carers to give consideration to their own mortality. Ms Epstein-Frisch, Family Advocacy, added:

...it takes quite a long time for parents to come to it and say, 'Yes, I'll give it a go,' because it is a scary idea to invite other people into your life. Then you need a whole lot of time and talking and what have you before you get into the big issues.[33]

6.33      Life Without Barriers added that because some older carers are often distrustful of outside support it is critical that time is invested in developing ongoing relationships.[34] In trying to develop planning cultures within disability communities across Australia, it is absolutely critical that planning not be seen as a one-off or short-term project.

6.34      In much of the evidence received by the committee witnesses emphasised the importance of putting the person at the centre of policy and practice through enhancing mechanisms which promote individualised funding and self-directed supports. It was argued that these mechanisms should also emphasise flexibility and recognition of the culture, values and preferences of each person and, where appropriate, their family.[35] Mr Edward Birt, Life Without Barriers, explained person-centred planning in the following way:

If you think about a system like person-centred planning, which is something that is talked about a lot at the moment in disability services, where the person's goals and aspirations are at the centre of what you are doing, their vision for what their life might look like is the driving force behind what we do, and every disability service standard around the country would say that is absolutely right: individual needs, decision making and choice, service access, valued status—the list goes on. They are all wonderful things. The legislation has it absolutely right, but I think that lack of funding and service options is a big problem.[36]

6.35      It is this approach that underscores the approach to establishing networks, mircoboards and circles of support.

6.36      Another critical aspect involved in establishing sustainable networks or circles of support is relationship building and family involvement. Various organisations spoke to the committee about the different ways in which they establish networks. PIN offered the following description of the process:

Yes, we usually encourage people to come along for the orientation and the workshop so they get an understanding of what PIN is and what we do. Primarily, the people that we support at the moment are 18-plus, although we have realised that it would be very good to start with children who are transitioning from high school, because often they lose their friends, who could become very good parts of the network. We have a network and membership coordinator. A family member will go and talk to the person and listen to what their expectations and hopes are. Sometimes they do not fit well with PIN—they want funding—and we talk to them about funding and where they can go for that, but we also say to them that funding alone is not the answer. We tell them that what you need is a very strong plan and you need to focus on who the person is, what their gifts and passions are, what contributions they can make and who they have been connected with in past years. We get them to think about and write down all of the people that have passed through their life that really had an impact on them. From there we encourage them to invite them to a social function. We talk about sharing the stories, sharing the history and through hospitality.[37]

6.37      Within each model outlined above a third party, a coordinator or facilitator, is utilised to help families plan. The PIN model is particularly interesting as it reveals the way that small community-based organisations can sustain networks. It also provides an example where people can build and sustain circles of support if they do not already have them. Under the PIN network model, each network has a facilitator and the facilitator is the only person who is paid. They are employed by PIN but they are selected by the person/ family.[38] Mrs Hitt impressed that while all the networks are different they attempt to progress through similar planning stages:

In the early stages it is important to have at least once-a-month meetings. It might take 10 hours or maybe a little longer with the coordinator to work through the early exploration stage and how they process that. I have got quite an extensive background in human services so I hurried my son along quite quickly because I knew what to expect. But if you have a family that does not have that background you would need a good 10 hours minimum, and then you have the network happening once a month for the first year. We found, because we have been going for a long time that we have one meeting with the facilitator and one meeting where there is a social gathering for people—we have a meal or go out somewhere.[39]

6.38      The other critical role undertaken by the facilitator is that if somebody moves out of the network for some reason the facilitator will work with the group to bring in a replacement. If the facilitator leaves for some reason, the coordinator—who trains and supports the facilitators—is reintroduced and goes through the process of recruitment, matching and getting the new facilitator sorted.[40] So long as there is funding for the coordinator and the facilitators, both of whom are essential, sustainability of the network is guaranteed. For larger organisations, such as Perth Home Care Services, they have a larger pool of human and financial resources to ensure their sustainability.

6.39      In order to ensure governance standards are met PIN has a board of management. The board includes: a businessman, a retired businessman, a physiotherapist; a local area coordinator with an extensive human service background; a financial planner, and a person who works in the disability field.[41]

Committee view

6.40      The committee acknowledges the important work that is taking place in the non-government sector to facilitate planning for people with disabilities and their families. Organisations providing planning support, many of which have been founded by parent-carers, have identified substantial community need. In responding to this need, these organisations have proved themselves to be flexible, innovative and consumer focused.

6.41      Community-based organisations have knowledge of local amenities and local service providers and a detailed understanding of state legislation. They also have a connection to the community that underpins their success. It is the community-based organisation who can build and maintain informal local networks. The committee therefore sees substantial benefit in this planning work continuing at the community level and considers that it is the size of these organisations, and their connection to the community, that is critical to their success.

6.42      However, while the committee acknowledges the efforts of these organisations and commends them for their initiative, it is clear that they are too few in number; their reach is limited and they do not reflect any type of integrated or coordinated national approach to managing disability planning. There are areas of the country, such as Perth, where government-funded and non-government-funded planning services are more available than in other areas of the country where there is little evidence that planning is taking place.

6.43      The committee also notes that there is growing demand for planning services and that many organisations offering planning services are under resourced and cannot meet demand. The committee therefore considers that it is critical that government increase its support for these organisations. Further, that while government provide the framework or architecture to facilitate the development of planning cultures, lifelong planning will continue to be implemented through community-based organisations.

6.44      Increased government funding, from both the Commonwealth and state and territory governments, would ensure the creation of new organisations to assist families with planning. The committee is concerned however that existing service or accommodation providers not be in a conflict of interest if they also choose to provide planning support services.

6.45      The committee also consider it essential that organisations responsible for planning are accountable for any monies they may receive. It is important that these organisations are properly constituted, have clear governance arrangements, and are transparent in their management of funds.

Recommendation 12

The committee recommends that the government, through the Department of Families, Housing, Community Services and Indigenous Affairs, work with the states and territories to establish a succession planning framework. The framework should:

• Make clear the importance of long-term planning;
• Provide guidance on the critical aspects of long-term planning;
• Take into account the individual differences of families;
• Support a range of approaches to planning.

Recommendation 13

The committee recommends that as part of the succession planning framework the government establish nationally consistent guidelines on lifelong planning. It is recommended that these guidelines consider matters such as: registration, constitution of boards, management of funds, governance arrangements, transparency, reporting requirements, and the role of paid facilitators.

Recommendation 14

The committee recommends that the succession planning framework be the first step in the development of an integrated and coordinated national approach to planning. In making this recommendation, the committee stresses that the framework should balance the need for individualised or tailored planning support with clear standards of governance and accountability.

Recommendation 15

The committee recommends that in its next Budget the government allocate funds to assist with the development of disability planning. It is suggested that this funding be made available to:

• Organisations currently involved in planning;
• Individual families seeking to purchase planning services from providers;
• Other disability service organisations that intend to develop lifelong planning services for families.

The committee recommends that this funding be made available on a recurrent basis.

Senator Rachel Siewert

Chair

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