Part 1. Submissions - Issues raised not in direct response to the four questions posed

Note: Italicised quotes are direct from submissions.
Numbers in brackets refer to the number of submissions that made reference to this issue.

Special Disability Trust issues raised in submissions

"You cannot have it both ways: unpaid care for decades and financial provision for the future by carers."

"...the new disability trusts cannot pay for services that do not exist or are of grossly insufficient volume and flexibility."

"The definition of severe disability...should be torn up."

Key SDT issues (from submissions)

• Low income earners could not afford to contribute $500 000; the cost of disability and care responsibilities over many years reduce income and prevent savings (33)
• The Government is to be applauded for recognising that planning for the future is an issue and taking this first step (18).
• 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 and living expenses) (13).
• The definition of severe disability is too limited (6).
• Undistributed income from the SDT should not be taxed, but retained as capital accumulation up to the SDT limit (4).
• The cap of $500 000 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 (3).
• The Capital Gains Tax and Stamp Duty paid on sale of primary place of residence when placed into the trust is a negative (3).

Single Issues

Other issues raised in individual submissions included: the use of the Secretary's delegated powers in so many areas creates uncertainty; the fact that the beneficiary cannot contribute to the fund; the need for clarification regarding ownership of property in the SDT- can it be in conjunction with another SDT?; can ownership be in conjunction with another individual?; what protections exist against challenging a will that establishes a SDT?; and will there be a tax burden on the parent/carer if the person with disability dies?

Suggested responses to Special Disability Trust issues raised in submissions

Key SDT suggestions (from submissions)

• Need to broaden the SDT to cover all areas of life not just care and accommodation (11).
• Increase the cap from $500 000 to around $1 million to allow funds to last longer and/or purchase more care (5).
• Enable the SDT to be like low-income superannuation - allowing co-contributions from government and families from early on in the life of a person with disability and the care cycle (5).
• Allow unspent SDT income to be transferred tax-free into the base until the limit is reached (then above the limit could be taxed) (4).
• Allow donations to a SDT to be tax-deductable to encourage other family members and friends to contribute (4).
• Exempt income from the SDT from tax until the death of the person or they become ineligible to have a trust (2).
• Make SDT contributions an option for salary sacrificing (2).

Single Suggestions

Other options raised in individual submissions included: allowing the beneficiary to contribute to the SDT; allowing for an advocate to keep in contact with the beneficiary and independently assist them as needed; make it possible to do weekly or fortnightly transfers into the fund; create a five year roll over period to allow income/expenditure to even out; do an ACAT-type assessment rather than the definition of severe disability; and use different tests for smaller funds.

General issues raised in submissions

"Families wish to ensure that their sons and daughters with disabilities are able to have a good life that involves family and friends, a place to call home, economic security, a sense of purpose and opportunities to participate and contribute to the community."

"The processes that would enable our organisation to accept offers and use them flexibly and creatively are just not in place."

"...need a Philadelphian lawyer to wade through it all."

Key General Issues (from submissions)

• Accommodation needs to 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. (29).
• Funding bodies are focussed on crisis and emergency management - they do not focus on planning for the future (25).
• Families don't know what options they have for future planning (23).
• 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) (23).
• There is no single contact point to help with planning and information (22).
• 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 (22).
• Respite care is important in helping families continue to care and plan and more is needed (16).
• One size does not fit all and different supports and accommodation are needed by individuals (13).
• There are no suitable accommodation places available - unmet demand (11).

Less Frequently Raised General Issues (from submissions)

• Concerns were raised regarding the quality of care provided in accommodation services (7).
• "Succession planning" assumes it's the responsibility of the parents to organise and arrange ongoing care - what is the role of society and government? (6).
• Planning requires Commonwealth-State cooperation (5).
• Some families could feel so desperate they contemplate murder-suicide (4).
• Don't trust state governments to do the right thing (3).
• Who can be the executor of their will and the guardian? (3).
• Concerns were raised about who will advocate on behalf of the person with disability and "keep the services honest"? (2).

Single Issues

Other issues raised in individual submissions included: many families with people with disabilities in institutional care make no provision for them in their wills; and the impact on family relationships of the extent of the inheritance going to the person with a disability.

Suggested responses to general issues raised in submissions

"In many cases it is not planning by families that is needed, but planning by governments to ensure that essential supports are available when needed."

"It needs to be someone with whom you have a relationship and who you can trust. Trust takes time to develop."

"Someone who will respect our decisions, even if they don't like our choices."

Key Responses to General Issues (from submissions)

• Fund services like PIN to provide free information, counselling and future planning workshops and supports for families (39). (See Appendix B(Opens in a new tab/window) for a list of planning tools, services and models mentioned in submissions)
• Need to start transition to new accommodation and support arrangements now - this can be helped by increasing hours of paid care, increasing use of respite, increasing the amount of live-in care, and developing independent living skills (36).
• Develop small-scale congregate care settings like aged care hostels and self-care units (23).
• Governments need to fund more accommodation and support to meet unmet demand (11).
• Build up and sustain circles of friends or circles of support to help with transition (9).

Less Frequently Reported Responses to General Issues (from submissions)

• Fund organisations to re-establish family support networks (6).
• Should be able to claim additional costs of disability and care as a tax deduction (5).
• Allow private, not for profit investment in supported accommodation by introducing an accommodation bond (4).
• Give people with disabilities direct funding to purchase their own care (attendant care model) (3).
• Develop a guaranteed care plan which the government must commit to implementing (2).
• Maintain a register of people with disabilities and their carers and review it every two years to determine what support is needed (2).
• Re-invigorate dying country towns by converting them to villages for people with disabilities (2).
• Allow people on DSP to withdraw and use any superannuation they have before age 60 to help with care costs given their lower life expectancy (2).
• Increase the Medicare levy to pay for accommodation and care costs (2).
• Develop innovative savings schemes for families and people with disabilities (2).
• Provide more counselling services (2).

Single Responses
Other suggested responses raised in individual submissions included: abolishing the means test for Carer Payment; increasing the amount able to be earned on DSP before it starts reducing; establishing a department in Centrelink to help carers plan for the future; funding creative housing research; transferring supported accommodation to the Australian government; and enabling provision in wills to purchase a room or place in supported accommodation and fund it from the proceeds of the house sale.