Executive summary

"When it comes to succession planning for our son, the only certainty we have at present is the fact we are going to grow old and in our declining years our son is going to become more and more vulnerable."

The Australian Government's Discussion Paper on Succession Planning for Carers and its request for submissions and information from families and organisations on issues to help plan for the future care and support needs of a person with disability, clearly struck a chord with ageing carers, family members and services. The responses demonstrated that this is a complex and challenging issue for families, the people they care for, service providers and governments; and one that is becoming increasingly urgent to address.

More than 100 submissions were received from families (59) and organisations (58) in response to the Discussion Paper. Consultations were also held in each capital city. Whilst each approach produced slightly different information; the results of both have been compiled into one report. The key cross-cutting themes from each of the approaches are presented in this summary and more detail is provided in the body of the report.

Many respondents indicated that planning for the future is a very difficult proposition for many families and carers. The key barriers to planning included:

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

Whilst the introduction of the Special Disability Trust (SDT) was welcomed as an early indicator that the Government was aware of the needs of ageing carers; it was widely reported that the SDT was suited mostly to middle-high income earners and was not particularly relevant to many low income earners or pensioners. After years of care, many carers find themselves on pensions and/or without assets. Some concern was also expressed around the possibility that governments could change the rules at any time.

With regard to the Special Disability Trust a number of issues were raised and options for improvement suggested including:

• Limiting the SDT to the provision of accommodation and care makes it too narrow (people don't want to have to set up and run two trusts; an SDT and another for day to day living expenses).
• The definition of severe disability is considered too limiting, and many people with mental illness and other disabilities would not meet the criteria.
• Undistributed income should not be taxed, but retained as capital accumulation.
• The cap of $500 000 (indexed annually) is too low - it does not recognise the full cost of care and would not be enough to fund support for a long period of time; either the money will run out or not enough care can be provided. The cap should be raised to around $1 million.
• The Capital Gains Tax and Stamp Duty paid on sale of primary place of residence when placed into the SDT is a negative and needs to be resolved.
• Donations to the SDT should be tax-deductible.
• Contributions to the SDT should be able to be made pre-tax by salary-sacrificing into the SDT.
• Some form of co-contribution to an SDT would be welcomed (along the lines of low- income superannuation with the government matching family contributions).

Throughout their submissions and at consultations, in addition to commenting on the SDT, carers, families of people with disabilities and organisations also raised a broad range of general issues facing families as they plan for the future care of a person with disability. The key general issues raised were:

• Future accommodation needs to be more than "just any place". It needs to be a home that takes account of social, emotional, health and personal care needs. It needs to be local and familiar and with people they want to live with.
• Funding bodies are currently focussed on crisis and emergency management - they do not focus on planning for the future.
• Families don't know what options they have for future planning.
• Supplying accommodation can often be managed - it's funding the ongoing support that prevents planning (some examples were provided of where houses have been offered to governments or NGOs and rejected due to legal and other technicalities).
• There is no single contact point to help with planning and information.
• Families recognise the limited capacity of siblings, with their own families, careers and mortgages, to take on the level of care that parents have provided over many years.
• Many professionals (accountants, lawyers) are not experienced in disability issues;
• Respite care is important in helping families continue to care and find time to plan and more is needed.
• Planning for future accommodation and support must recognise that one size does not fit all; and that variety and choice are needed by individuals.
• Concern that focussing on private provision and succession planning assumes parents have full responsibility for future care arrangements and that governments are relinquishing responsibility.
• Governments are not building enough public accommodation and some approaches appear ideologically opposed to families' preferences for small scale congregate care settings.

In response to these general issues, a number of suggestions were made that would help families plan more effectively for the future including:

• Providing funding for planning services which are regionally based and can provide advice, information, planning support and review, counselling, and referral services to families and which involve family to family sharing of experience and option development.
• Establishing a centre of expertise such as a website and/or a toll-free information line providing advice, information, support and referral services around future planning.
• Starting the transition process now. By increasing access to respite, paid care in the home, independent living skills or accommodation places now, families would be able to reduce dependence now and prepare for the time when they have to relinquish care, enabling a smooth transition to new arrangements.
• Providing more accommodation support now to enable families to begin to transit to new arrangements and to give some sense of certainty to their planning. Families should be able to explore the full range of accommodation support options and develop models that best suit their family member ad their situation.
• Having governments shift their focus from crisis to long-term planning and starting now.
• Encouraging services to help families establish and sustain "Circles of Support" or "Circles of Friends".

Submission respondents were less clear about how to encourage private provision within families, or about informal arrangements or schemes to help parents provide for their child with disability over time. Similarly little information was supplied around innovative models of accommodation that would assist parents and families make provision for their child with disability. However, a number of good accommodation models and proposals were referred to (see Appendix A(Opens in a new tab/window)); but in most instances information and detail was limited. As a result, these areas would appear to remain open for further research and investigation.