Submission to FaCSIA. Succession Planning for Carers

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1 Submission to FaCSIA Succession Planning for Carers December 2006

2 This submission was prepared by: Gill Pierce Senior Policy Advisor, Carers Victoria With input from the Network of Carers Associations Date: December 2006 On behalf of: Carers Australia PO Box 73 DEAKIN WEST ACT 2600 Telephone: Facsimile: Website: Carers Australia 2006 This work is copyright and may not be reproduced either in whole or part without the prior written approval of Carers Australia. ii

3 Table of Contents What is known about ageing parent carers?... 1 Category one... 4 Category two... 4 Category three... 5 Category four... 5 Models of intervention recommended for ageing carers Improved National Data collection on services users and their families National development of a Respite and Transition Support Service for Ageing Carers... 5 Principles in the model... 7 Objectives... 7 Services Components... 8 Operation of a Regional Respite and Transition Support Service for Ageing Carers... 9 Ensuring National Consistency: Development of guidelines for the content and delivery of a program of futures planning workshops for care-giving families, tailored to the different services systems in each state National professional development short courses for staff of both crisis intervention / high-level support services for ageing carers, and staff of Respite and Transition Support Services Raising awareness of ageing carers in general community care programs Modifying the Special Disability Trust mechanism Ensure the availability of an appropriate supply and range of supported housing options Informal guardianship or key person successor arrangements Addressing issues at the interface between services systems...14 Conclusion...14 Appendix 1: Futures planning workshops...16 iii

4 Introduction Carers Australia is the peak organisation representing Australia s 2.6 million unpaid family carers who are providing care for people with disabilities, mental or chronic illnesses, or who are aged and frail. Our members are the Carers Associations in each state and territory who directly deliver specialist information and advice to carers, and counselling through the National Carer Counselling Program. State and Territory Associations have a substantial carer membership. Some deliver education programs for unpaid carers as well as accredited training programs and short courses for services providers. The advocacy for carers from the network of Carers Associations is based on six key principles: Caring is a personal, social and public responsibility, shared by individuals, families, business, community organisations, public institutions and governments. Carers are recognised and valued for their important contribution to the well being of the Australian community and the people whom they support, and for their unique expertise and skills in the caring role. Carers are recognised as individuals with their own needs, within and beyond the care situation. Carers are entitled to the same rights, choices, and opportunities as other Australians, in order to enjoy optimal health, social and economic well being and to participate in family, social and community life, employment and education. Carers are included in decision-making that relates to their care situation and impacts on their lives. Carers have a voice in legislation, policy and program development, service implementation and evaluation across all sectors. Carers are able to access a wide range of information and resources, informal support and responsive affordable services to complement caring. They are entitled to carer friendly policies and practices in other areas of their lives. The network of Carers Australia and the Carers Associations has had a keen interest in the emerging crisis of increasingly aging parent carers of people with life long disabilities. It has undertaken a wide range of consultation processes with ageing carers, participated in planning services for ageing carers in many states, and researched national and international literature concerning ageing carers and their needs. Outlined below is our submission in response to the Australian Government Department of Families, Community Services, and Indigenous Affairs (FaCSIA) Succession Planning for Carers: Discussion paper. The depth of our response indicates the need for ongoing dialogue with senior FaCSIA officials. What is known about ageing parent carers? As a consequence of the increased life expectancy of people with disabilities, more ageing carers are likely to be outlived by their disabled son or daughter than in previous generations. A policy crisis is emerging. Governments are struggling to meet to the urgent and growing needs of older carers, and their need for alternative forms of accommodation support for their offspring. The 2003 Survey of Ageing, Disability and Carers estimates there are currently 6,400 parent carers aged over 65 who care for a son or daughter with a disability. 1 In addition, in 2003, there were 8,900 1 Australian Bureau of Statistics (2003) Disability, Ageing and Carers: Summary of findings. 1

5 other carers aged over That is spouse and sibling carers and other relatives and friends caring for people with disabilities. A proportion of these are expected to be caring for people with life long disabilities. They will have taken on the care of a disabled relative as a consequence of carer death or ill health. The numbers of ageing carers will expand exponentially over the next two decades when the next primary parent carer cohort, the 44,400 parents currently aged 45-64, will move into the post 65 age group. 3 Some ageing carers will need alternative forms of accommodation for their offspring. We know that ageing parent carers are: Mostly mothers, who live with their son or daughter. Some will provide substantial support to their son or daughter who lives elsewhere. In general very positively adapted to caring, which has become a key part of family business. 4 Their caring expertise is not easily replicated in substitute care arrangements. In general, extremely self-reliant. Anxious about the future of their son or daughter and wanting to be assured about options for their future accommodation and security. Ambivalent and concerned about the future, but reluctant to engage in planning for the future of their son or daughter. Ageing carers can be difficult to engage in thinking about long term care. o Some carers hope for a planned and suitable transition for their son or daughter prior to their own failing health. Others are poorly informed about or distrustful of supported accommodation options. 5 o Some carers are interdependent with their son or daughter and reluctant to let go 6 (if there was an option for this). They wish to maintain home care for as long as possible. 7 o Many carers struggle with the unanswerable question of who will care like I do? They may wish to avoid or blot out decisions about an uncertain future. o Many ageing carers have difficulty raising their concerns about the future with their other adult children or relatives. Often unaware of a fall back carer, and likely to find it difficult to ask relatives about their willingness to provide future care. 8 Unlikely to have developed a long-term care plan. Many carers have non-expressed assumptions that family members will assume responsibility, even though sibling studies and demographic trends do not support this assumption. Likely to limit their services use to a day activity, vocational or employment program for their relative; or chose to maintain the person with a disability at home without formal services. Potentially struggling with their own health issues and frailty. Potentially reliant on their offspring for companionship and support in routine household affairs. Less likely to use services than their younger counterparts and as such are hidden carers. (International research from outreach programs 9 suggests around 25 50% of ageing carers are 2 3 Australian Bureau of Statistics (2003) Disability, Ageing and Carers: Summary of findings. Australian Bureau of Statistics (2003) Disability, Ageing and Carers: Summary of findings. 4 Heller and Factor (1991); Smith and Tobin (1993) Greenberg (1993). 5 Pierce, G. (1993):CCRC, Brisbane South (2004). 6 7 Nolan and Grant (1996); Cameron (2004) Llewellyn et al (2003). Bigby (2000); Heller and Factor (1991). 8 Australian Institute of Health and Welfare (2003) Australia s Welfare p93. 9 Jackicki et al (1996), McCallion and Tobin (1995). 2

6 not using formal services: the preliminary work of some Commonwealth Carer Resource Centres confirms this view. 10 Poor use by carers of available services is because: Many carers have never engaged with formal services. Many carers found services unsuitable or unavailable for their young adult offspring. Many carers have withdrawn from services as a consequence of negative experiences. Families from culturally and linguistically diverse communities have a significantly lower rate of use of disability services. The majority of people with significant psychiatric disabilities do not consistently use Commonwealth State and Territory Disability Agreement services. Many carers are distrustful of new services models. The issue of the future is currently on my mind. Most of the time I manage to keep it below surface, but now and then it rises to the top and I start worrying, searching, asking questions, and generally end up feeling depressed. Organisations are often vague and lack information, and other families who are normally very sharing of their knowledge tend to keep quiet with anything they know, in case it jeopardises their own chances for support for their child in the future. Lawyers and accountants promise to look into options but don t come back to us, and we don t know whether to try and stretch ourselves financially by buying a unit in case there is any chance of independence, or whether this would also risk any chance of support. We spend a lot of time thinking about this without any outcome or decisions. We secretly hope this can be put of until much later, but also worry about what if we aren t around to make any decisions. All parents have concerns about their children s futures, but nothing compares to the worries of those who care for their children with a disability. We need an organisation to help us through this process. Not a project based on a once off grant. I look forward to hearing of the results from this planning project, and hope the money promised by the government will be used towards practical measures for carers and their families. Carer, South Australia Historically, ageing carers have had a very different experience of support by the state to their younger counterparts. They are the cohort who was frequently advised to institutionalize their son or daughter. They are the cohort who worked to establish day training centres, adult activity centres, hostels and group homes to support their offspring. They are the cohort which was assured about the availability of ongoing supported accommodation by the state. Many ageing carers perceive themselves as being on waiting lists for future government accommodation when they need it. The coping strategies, values and preparedness of ageing carers to seek assistance from formal agencies have been markedly affected by the limited nature of public policy support offered to them. The primary childrearing years of ageing carers usually featured few day education or day activity opportunities, and non-existent respite or in home support. Most ageing carers have not experienced the emergence of the developmental approach in disability services or disability rights ideology. 10 Cameron, J (2004); South Brisbane CCRC (2004); personal communications from other CCRC s 3

7 The sons and daughters of ageing carers are: Middle aged and older. Likely to attend sheltered day programs. Likely to have the capacity for greater independence. Likely to have highly family centred social networks Likely to be equally concerned about their own future. The needs of ageing carers and the people for whom they care can change rapidly as a consequence of a family crisis, a breakdown in carer health or carer death. Thus it is important that long-term care plans, emergency and succession plans are collaboratively developed and understood within a family and social network. Long-term care plans and succession plans are important 11 as they can: Avert the crisis of an ill prepared transition from parental care. Current experience suggests that some people with disabilities are equally anxious about what will happen when their parent or carer dies. There are many anecdotes about people with disabilities who experience painful dislocations from family, friends and familiar services when their parent dies. They also lose their key supporter. Ensure a degree of continuity and stability for the person with a disability, through use of the informal support network, especially through a key person successor 12 or a circle of informal support. 13 Assist in forecasting future services demands. 14 Assist ageing carers to resolve unfinished business. 15 Carers Australia has developed a framework to categorise the potential support needs of the current cohort of ageing carers, and to illustrate the diversity of their potential need. Different interventions and support services are likely to be required by carers in each category. Category one - Ageing carers currently in satisfactory circumstances with comfortable relationships, roles and lifestyles. They include hidden carers, or non-services users as well as carers who may use day activity programs but have few links with respite and other community care services. These carers adapt to age related changes while continuing to care. Concern about the long-term future may be a major stressor, although individual carers are likely to avoid long term planning. These carers may need information about services options, as well as education and assistance with long-term care plans, succession plans, and mutual support opportunities. Category two - Ageing carers with a low degree of increased need for supplementary support services. These needs may have arisen as a consequence of changes in their health, mobility or physical capacity, or changes in the needs of their offspring. These carers may need active support with long term care planning and additional in home or out of home assistance, tailored to the needs of the individual situation. They may choose to work towards a planned handover of care. 11 Smith (1005); Bigby, Ozanne and Gordon (1999); Nolan et al (1996); Carers Coalition Workshop, Carers NSW (2004) Bigby (2000). Brotherhood of St Laurence, Victoria 14 Heller and Factor (1991); Magrill et al (1997) 15 Grant (1989; Heller and Factor (1991). 4

8 Category three - Ageing carers with a high degree of increased need for supplementary assistance. Their increased need may be episodic and result from periods of illness or hospitalisation: a short-term inability to care. Alternatively their needs may be ongoing and result from marked changes in carer health and physical or mental capacity. Substantial short or longer-term packages of support services may be required to either provide short-term substitute care or to support the continuity of care at home. Both should be accompanied by assistance with long term care planning and working towards a handover of care. Category four - Care situations in crisis as a consequence of significant carer ill health, incapacity or carer death. Interim support arrangements may require access to substantially sized funding packages, and crisis intervention to assist the person with a disability and his or her relatives to find substitute accommodation or develop a longer-term care plan. These care situations are likely to be registered on state accommodation registers. Models of intervention recommended for ageing carers 1. Improved National Data collection on services users and their families While there is rich research and grey literature about the needs of ageing carers and the various program strategies to address their needs, nationally there is a paucity of planning data. Little is systematically know about the current group of ageing carers, the make up of the care situation, carer age, health and capacity to continue or the expressed future needs and preferences of ageing carers and the people for whom they care. Information is separately managed within different state and territory administrations. Carer circumstances and needs are not adequately explored or recorded within the current Minimum Data Set. Data collection about carers has both definitional and collection problems. Little research in Australian has been undertaken concerning the needs of ageing carers of people with a long-term psychiatric disability. There is a need to improve data collection about care situations through the Disability Services Minimum Data Set. 2. National development of a Respite and Transition Support Service for Ageing Carers Carers Australia s paper Aging Carers: Succession planning and long-term needs, June 2005, (see proposes the development of regional Respite and Transition Support Services for ageing carers. The model is drawn from an informed knowledge of available research, services evaluations and other program literature. The model provides a means to encourage families to plan, to encourage family care provision (preserving family capital) and to encourage, where appropriate, a combination of public and private resources. The use of housing trusts and other private accommodation arrangements are included. Regional Respite and Transition Support Services would provide a proactive, preventive outreach support service for ageing carers which: 5

9 Identifies ageing carers, progressively building trust and engaging them as clients. 16 Reassures ageing carers that they are known within the system. Incrementally encourages carers to access existing formal services according to their need, including respite. Provides education and support concerning long-term care planning and succession planning tasks. Facilitates long term and emergency planning for the care of the person with a disability. Engages the resources of the informal support network, exploring their capacity to provide future accommodation, care or support. Organises mutual support opportunities for ageing carers. Progressively collects data on the current needs and circumstances of this group. The service would have the capacity to purchase additional respite and other support services according to the needs of the care situation. It would refer clients on to specialist disability accommodation support programs or high care packages when their needs became complex or urgent. Outreach would be undertaken gradually and progressively with the aim of identifying all ageing carers in the region. Many ageing carers will not initially choose or need additional respite or support services. However, the availability of supportive relationships with a key worker, and information on care planning, succession and emergency planning will reassure them that their current and future needs are known and that help is available if their needs change. Regular follow up calls to clients will pave the way for future requests for help when family circumstances change: thus ageing carers may be linked with the service for an extended period. The progressive registration of identified ageing carers on regional database with associated reporting will assist governments with the future planning of services. The service would target ageing carers with low needs, and those requiring additional short term or episodic support (categories 1-3 above). It would: Deliver limited respite and support services within a case management framework and in a context of supporting families with long term and emergency care planning. Use the provision of respite and support services as a means of exploring, modelling and practicing eventual separation. Encourage planned transitions from parental care, particularly through informal family arrangements or the combination of family resources with public provision through the use of housing trusts or cooperative group housing arrangements. Provide individualised funding to top up existing supports and services where necessary, and to broker responses to episodes of changed need. Include a community development component to assist in developing or expanding the support services needed by this group. Optional respite and support services may include: Facility based respite, camps and group holiday arrangements over weekends or in week blocks. Regular or further attendance at day and evening recreational and social activity programs. 16 Nolan et al (1996); Bigby, Ozanne and Gordon (1999); personal reports from Victoria s Options for ageing parents programs and CCRCs. 6

10 Community access support programs or independence skills development support. In home support arrangements. Some carers may choose to access respite support as an alternative care arrangement over several weeks; others will prefer regular short, evening or weekend respite arrangements. The proposed model has the capacity to fill a significant current gap in the services system. It will contribute to preventing future crises and to supporting planned transitions away from family care. Principles in the model Service delivery would: Focus on outreach, collaboration and relationship building. Deliver respite and other supports within a context of facilitating ageing carers to focus on the longterm needs of the care situation. Have a dual focus and consider the needs of both the carer and the person being cared for. Ensure positive respite and support experiences for both the carer and the person with a disability. Be driven by the expressed needs and preferences of the care situation. Recognise the right of the person with a disability to self-determination and increased independence. Be respectful of the life experiences of ageing carers and the social and policy context in which they occurred. Engage the support of the informal family network in providing interim or ongoing care and support for the person with a disability. Maximise self-help and empower the carer and person needing care. Objectives The objectives of a regional respite and transition support service would be to: Identify ageing carers through outreach to existing services and public promotion. Progressively contribute to a regional data system that records the needs and circumstances of ageing carers and the people for whom they care. Assist ageing carers in planning for and accessing regular respite and other support to: o Prevent unnecessary breakdown in the care situation. o Encourage the independence and self-determination of the person with a disability. Provide information forums about emergency planning, succession planning, wills and estate planning and housing options. Support ageing carers and the people for whom they care to develop long term, succession and emergency care plans, where possible in collaboration with the family network. Promote self-help and joint problem solving among carers and their families, including the use of housing trusts and cooperative arrangements. Support ageing carers and their families through periods of change in their circumstances. Assist ageing carers and people with disabilities through the transition to out of home care or permanent independent living arrangements. 7

11 Services Components A regional service could have six key components, funded in accordance with population size, demographic make up and existing regional data on ageing carers. Components include: Outreach, identification and intake assessment. Needs assessment, care planning and care coordination. Family information, education and transition planning support. A discretionary funding pool to purchase needed services. Needs data collection. Promotion of mutual support. Discretionary funding pools would be regionally managed and include: Brokerage funding to purchase additional respite and support services for individual care situations. A capacity for a pooling of funds to allow the cost effective development of ongoing group services, as needed by the regional client group. 8

12 Operation of a Regional Respite and Transition Support Service for Ageing Carers Diagrammatically, a regional service would operate as follows: Marketing and Promotion Protocol and procedure development Outreach, identification and engagement with ageing carers Information/education about service Establish eligibility Intake assessment and data collection Registration as clients ~disability and mental health services ~hospitals ~HACC ~care packages ~primary care ~carers respite ~centres ~media Services Options No active intervention required ~Mutual support/carers support groups ~Education workshops Supported long term care planning Supported emergency care planning (family involvement) Respite, supplementary and episodic support ~Needs assessment ~Carer planning ~Case management/facilitating supplementary assistance ~ Regular follow up and monitoring Implement succession or emergency plan Crisis or Situational Change Transfer to high needs disability services system Review care plan/increase supplementary support The model draws together a wide range of excellent practices approaches and tools drawn from the practice literature, for example: The Life Long Planning Programs in Queensland and Western Australia. Emergency Care Planning (Foundation for People with Learning Disabilities, Sheffield, UK, Barwon CCRC and Victorian Department of Human Services). Life Story Work in UK, USA and Canada which involves ageing carers and people with disabilities in capturing key information about their history, contacts, communication, likes and dislikes etc. 17 Circles of Support schemes. Brotherhood of St Lawrence, Victoria and others. 17 Barwon and Grampians CCRCs (2003): Wagga NSW; Foundation for people with Learning Disabilities, Sheffield UK (2003). 9

13 Facilitating Transition: an evaluation of pilot case management programs for older carers of adults with a disability (Victoria). The Sharing Caring project, Sheffield UK. South Brisbane CCRC Positive Futures. The Carers Coalition, New South Wales Ensuring National Consistency: The implementation of a national Respite and Transition Support Service for ageing carers will require: The national development of program guidelines and practice tools for: o Eligibility and Needs Assessment. o Case management support for ageing carers. o Care planning including respite care planning, succession or long term care planning and emergency planning. o Carer education programs concerning long term care planning, financial planning, wills and estate planning, as well as guardianship and key person successor arrangements. (Consistent with state provisions.) o Registration of eligible clients and data collection about their needs. o The development of collaborative housing arrangements, family governed care and housing trusts. It is desirable that there is equity and national consistency in the services and supports that are available to ageing carers. This requires: Clear program guidelines. Consistent program direction support on a national basis. State based Policy and Program Coordinators to oversee and coordinate program development, monitoring and evaluation. 3. Development of guidelines for the content and delivery of a program of futures planning workshops for care-giving families, tailored to the different services systems in each state. A series of interactive family workshops (2-3 hours per week sessions over 6-8 weeks) would aim to: Encourage carer and family awareness of the need for long term and emergency planning. Increase family knowledge and skills about key planning tasks. Encourage proactive and preventive planning approaches as a reassurance for both families and people with disabilities. Encourage dialogue between families concerning barriers to and issues in futures planning. Encourage ongoing informal family care, in the interests of the person with a disability. The development of guidelines, resources and tools could readily be undertaken through the Network of Carers Associations and delivered in a train the trainer model. Notional content is outlined in Appendix National professional development short courses for staff of both crisis intervention / high-level support services for ageing carers, and staff of Respite and Transition Support Services. Specialist staff development programs concerning the needs of and issues for ageing carers should be developed and delivered to case management services (government and non government) who support ageing carers and people with disabilities. These will: 10

14 Support a cultural shift in interventions from a disability rights focus to a holistic, family focus. Contribute to a broadening of practitioner knowledge and skills. Develop ageing carer experts or champions within key agencies. Carers Victoria is currently rolling out a professional development short course concerning ageing carers for staff of the Department of Human Services and non-government organisations. It will assist case managers and key workers to understand the needs and issues of ageing carers, and provide a raft of tools and strategies to assist them to encourage carers to engage in long term and emergency planning. 5. Raising awareness of ageing carers in general community care programs. Hidden ageing carers are known to access the Home and Community Care program, are known to general practitioners, and may appear at Community Health Centres, and in acute care settings when carer hospitalisation is needed. Hidden carers of people from culturally and linguistically diverse backgrounds may be known to ethno specific welfare agencies. Outreach to these agencies and promotion of the availability of Regional Respite and Transition Support Services will assist hidden ageing carers to access the specialist support and assistance they require. 6. Modifying the Special Disability Trust mechanism. Carers Australia applauds the development of Special Disability Trusts, which allow parents and families to place up to $500,000 in trust for the current and future care and accommodation of the person with the disability. However, feedback from carers suggests the following changes should be considered. Trusts should have the capacity to: Allow for payment of insurance, rates, and household maintenance of any accommodation bequeathed or purchased for the person with a disability. These costs are likely to be beyond the capacity of a person reliant on the Disability Support Pension. Allow payment of immediate family members from the Trust. Carers are concerned that current arrangements preclude a payment of a family member for interim care while longer-term arrangements are made. This can put the family member at financial risk when planned transitions to alternative care take years to achieve. Reconsider marketing and promotion: Many families, including older families are overwhelmed at the notion of putting $500,000 in trust. They focus on and feel defeated by such a large amount, which is often seen as beyond their reach. Marketing literature on the Special Disability Trusts also tends to promote case examples that do not equate with the common circumstances of carers, more than 50% of whom are in the lowest two income quintiles. 18 Promote to ordinary families, through appropriate case examples, o The benefit of putting smaller amounts in trust without impact on the Disability Support Pension. o The establishment of a Special Disability Trust through Wills and Estate planning. Promote the Special Disability Trusts mechanism through trusted and trained professionals who work with carers. They can pass on information in the right way and at the right time. 18 AIHW (2005) Australia s Welfare 11

15 Reduce the complexity of the Special Disability Trust mechanism: Carers are daunted at the cost of establishing a trust, the complexity of the trust deed, and the preference for Professional Trustees. They are concerned that Centrelink is to be the operational arm, as many report difficulties with Centrelink services. Consider drafting a standard, simpler Special Disability Trust mechanism for promotion through Public Trustees or similar. Encourage all families to establish savings trusts as early as possible in their child s life so that ongoing contributions can be made. Such a mechanism could be free of set up or reporting costs until the Trust becomes operational. Ensure that unexpended income to the Trust in any one financial year can accumulate to meet future needs. It shouldn t be taxed at the highest marginal rate. Consider making gifts to Trusts tax deductible so that younger friends and families can donate to the trust with tax deductibility. 6. Ensure the availability of an appropriate supply and range of supported housing options. The future services system will allow various combinations of public and private provision of support, accommodation and care for people with disabilities. However, more work is required to ascertain the numbers of carers of people with disabilities who will be in a position to avail themselves of these opportunities. They are likely to be in the minority. Where carers wish to plan the transition of their son or daughter away from parental care prior to their death, or to retire from caring, the provision of a range of quality government funded accommodation options will be required. Both the state and commonwealth governments will need to make a considerably higher rate of joint investment in supported accommodation. The unmet needs study by the Australian Institute of Health and Welfare (2002) estimated that there were 12,500 people needing accommodation or respite services. A range of supported accommodation options, beyond private provision, will be needed to accommodate the needs of ageing carers and people with disabilities for transition to care outside the home. These will range from staffed supported group homes, to independent living arrangements with drop in support as required. Currently in Victoria there are more than 4,000 people waiting for accommodation, a day service, or in-home support on the DHS Disability Support Register. 19 More than 2,000 of those people are listed as in urgent need of a service, and a high proportion of these are ageing carers in need of accommodation for their son or daughter. Disability Housing Trusts and parent governed accommodation models are in early stages of development but have great potential to assist some families to use the resources they have to provide accommodation for their son or daughter. However, in many states, operational details, and legal and equity issues in their operation are still to be resolved. A national project to collect and disseminate the practice learning from the various housing trusts for people with disabilities is recommended. Consideration could be given to the introduction of a national hypothecated tax to assist commonwealth and state governments with the costs of long-term care for people with disabilities as well as frail and disabled older people. Carers Australia is keen to ensure that the current trend of shifting too many of the costs of long term care onto families is reduced. 19 Dec 2005, DHS website homepage 12

16 Carers Australia is aware that long term care giving, particularly of people with severe and profound disabilities, is largely undertaken by family carers and may occur at great cost to care giving families who meet: o The financial costs of care. o The opportunity costs of care. o Experience costs to their health and well-being. The contribution of carers to the Australian economy is estimated to be $ 30.5 billion per year in replacement costs. 20 The capacity of 50% of carers to contribute to their own retirement is extremely limited. 21 But governments ask them to also contribute to the long-term care costs of their family member. 7. Informal guardianship or key person successor 22 arrangements. For many carers, a key issue concerning future care is to have the capacity to appoint a relative or friend as a key person successor, to oversee the care and wellbeing of the person with a disability, and to act as their advocate, supporter and nurturer in an ongoing way. While carers commonly have responsible person statuses afforded to them in relation to medical and dental care and financial decisions, and have nominated representative status with Centrelink, frequently issues arise which challenge their right to act on behalf of the person for whom they care. The Privacy Regulations have increased the problem. People with severe or profound disabilities lack the capacity to appoint people as Enduring Powers of Attorney (medical and financial), or Enduring Guardians in relation to their personal affairs. Parents of people with severe and profound disability are essentially limited to recommending in their will a person they trust as administrator for the financial affairs of the person with a disability, or appointing a trustee of a family trust set up in the interests of the person with a disability. These focus on the management of financial affairs. Current protective services arrangements throughout Australia do not readily allow parents of people with significant disabilities to appoint informal guardians or key person successors to oversee the ongoing care of their son or daughter in an ongoing and holistic way when the parent is no longer able. While the various state and territory tribunals can appoint guardians and administrators for people considered to be at risk, consideration of a more meaningful parent controlled mechanism which provides reassurance to ageing carers about the future is required. As parents of a 33 year old we have been addressing this problem and our area of greatest concern is regarding ongoing relationships. We acknowledge that for many accommodation, and particularly accommodation choice, is a major issue, and more information re legalities and trusts is certainly of great value, but no matter how well we provide for our children in these areas, their loneliness is the greatest concern. How do we set up our children in a network of meaningful and mutual relationships that will continue beyond us? It is not simply a matter of setting up a trust with trustees that will watch the dollars and cents, we want someone to administer it knowing our son's likes and passions and that the decisions of how money is spent reflect the spirit of our intent. Our son will have a roof over his Access Economics (2005) The Economic Value of Informal Care. AIHW (2005) Australia s Welfare. 22 Bigby C, Moving on without parents: planning and sources of support for middle aged and older adults with intellectual disability. 13

17 head, be well feed, and supported in his basic needs, but will he be alone - and the solution is not being herded with other disabled people. Carer SA. 8. Addressing issues at the interface between services systems. Sustaining and supporting care relationships, which involves the need to provide support to both ageing carers and people with disabilities will challenge community care, as a consequence of issues at the interface between aged care, disability, mental health and health care services. There is an increasing need for problem solving processes around the barriers that arise at the interface between services. For example: How can we develop responsive and appropriate policies that govern arrangements for combining packages of care and support which are received respectively by an ageing carer (such as CACPs and EACH), and a person with a disability (with a disability support package) so that support to the care situation is coordinated and the least intrusive arrangement possible is made? Policies to govern arrangements for combining and delivering support packages from different funding sources are required to ensure streamlined support to care situations involving ageing carers. How do we ensure that people with disabilities can receive appropriate community support services when they are over 65 and living with very elderly carers? How do we reduce the risks to ageing carers that may result from poor access to appropriate community aged care programs for their son or daughter? How do we sustain caring relationships, and address the barriers for people with disabilities to access aged care facilities with their parent when there is interdependence between the carer and the person with a disability? How do we develop appropriate responses to acute health episodes for an ageing carer who needs hospitalisation? Note that some Victorian Emergency Departments automatically ask about caring responsibilities for each admission. What is needed to ensure that ageing carers (who may be frail or ill) can continue to have regular meaningful contact with and provide emotional support and nurturing for their offspring who lives in supported accommodation? How do we develop substitute services to support people with disabilities who may live separately from their elderly parent but still receive considerable care and support? What systems are needed to reassure aging carers about ongoing support to their son or daughter? How can we replace the crisis intervention and emotional support services that have always been available for many people with psychiatric disabilities who live independently? Their elderly parents have continued to assist and encourage them to access appropriate treatment, seen them through periods of acute illness, and assisted them with financial aid, searching for accommodation or employment and dealing with Centrelink? Interdepartmental exploration of emerging barriers and difficulties will be required. Conclusion Carers Australia is aware that considerable policy and research work is required to underpin the development of responsive support services for ageing carers, and to develop a diversity of alternative forms of accommodation options, public, private and combined. In particular we recommend: The immediate development of a specialised national Respite and Transition Support Service for ageing carers as outlined above. 14

18 The development of guidelines for the content and delivery of Futures Planning Workshops for carers of people with disabilities, which are tailored to each state and territory. The immediate development of national professional development short courses for professionals working with ageing carers. Significant increases in both commonwealth and state investment in the development of an extended range of supported accommodation options. An immediate national review of the strengths and weaknesses of Disability Housing Trusts, Cooperative Housing arrangements and parent governed accommodation options, and promotion of the most effective alternative models. 15

19 Appendix 1: Futures planning workshops These are likely to take the form of a series of day or evening sessions over a number of weeks. Content may include: The challenge of confronting the future. The impact of (anticipatory) loss and grief. Financial planning and financial administration. Wills and estate planning. Emergency care planning. Life story work. Arrangements for appointment of key person successors, or guardians where appropriate. Informal support networks or circles of support. Respite and support services: preparing for transitions. Options for accommodation and support, including family provision, housing trusts and family governed options. Self care. 16

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