Part 2. Submissions - Issues raised in direct response to the four questions posed

Only 26 of the 117 submissions (22%) directly responded to the four questions posed in the Discussion Paper. Due to this small number, the number of submissions referring to a theme has been included rather than the number referring to a particular measure or idea.

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

Question 1. What prevents parents and families from planning for the future?

This was the most comprehensively answered of the four questions. Many submissions articulated clearly and succinctly why planning for the future is difficult for families caring for a person with disability. Personal experience shone through many of the responses, providing detail and understanding.

Key issues in response to Question 1 (from submissions)

The lack of accessible information prevents effective planning (16)

• There is a lack of knowledge and awareness of ways to provide for future care. Many carers are unaware of what they can do, and don't know how to start, who to go to and when to start.
• There is no central information point.
• Many older parents and carers have been broadly independent from the service system for much of their life - they have done it themselves and "just got on with it" - and therefore may have little or no contact with services or know very little about what the options are likely to be.
• CALD carers can face particular issues such as difficulties accessing services, limited culturally-sensitive services and diminished support networks.
  "You don't know who to speak to"

Limited finances and the cost of care (16)

• 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.
• Equity in the family home may be needed to provide care for ageing parents rather than for a child with disability.
• Migrants with disability, including their carers, have to wait ten years before they are eligible for any income support. This means financial resources are often substantially curtailed. "Without finances you cannot plan you can only hope. In any case there are no options in place for us to plan for."
  "A significant barrier to families is their limited financial standing, particularly for aged parents who have over many years borne the brunt of the financial burden in caring for their disabled son or daughter."

Future planning raises sensitive issues (13)

• Future planning requires people to face and discuss their own mortality - many people are not comfortable discussing death and dying, and will put it off.
• For people with episodic illnesses or disability (eg schizophrenia) succession planning can seem "disloyal" by virtue of it confirming that you believe there will be "a next time", undermining faith in treatment and the ability to manage the illness or disability.
• It requires family members to identify and discuss issues that are sensitive, private or confidential, for example the real value of assets, the unspoken assumptions of family members regarding inheritances and care responsibilities.
• For some CALD families not providing care within the family may be seen as "shameful" and "letting the family down". Female relatives, a mother or sister, may take on the role of carer as a duty more than a choice.
  "Even talking about this makes my wife anxious."
  "A lot of the information that needs to be discussed is personal, it's hard."

No long term places available - only for crisis (13)

• A planned transition is not considered feasible whilst services and governments continue to place only those people with disabilities in crisis or emergency situations.
• Without places available locally and some sense of certainty about where the person with the disability may end up it is too difficult to try to establish networks of support and to determine what different roles or support may be needed.
  "But we can't get any (respite), because the respite beds are all taken up with people in crisis waiting for permanent accommodation."

No time and no energy to spend on planning (10)

• Many carers do not have the time or energy to undertake planning due to the ongoing day to day pressures of caring. Planning is viewed as important rather than urgent and dealing with the here and now care and support for a family member takes precedence.
  "Thinking about the bigger picture is hard when we cannot get today's needs met."
  "Exhaustion from long term caring with inadequate support, inadequate respite and (often) lack of acknowledgement."

Unrealistic expectations and unspoken assumptions (10)

• Many families may have been told at the time of birth or diagnosis that their child would not live to a very old age, so many parents expected to outlive their son or daughter. Planning for the future has been a low priority.
• Many parents contributed to the establishment of service organisations and hold an expectation that these services will provide for their children when they are gone; despite changes to funding arrangements and government policies.
• Some parents assume that a sibling would take over the care and responsibility for their brother or sister with a disability and that things will continue "as normal" without ever checking this assumption with their other children.
  "We've seen what Mum goes through - no way."

Planning for the future is complex (7)

• Developing a succession plan is a complex task. It is a lot more difficult than writing a will. It takes a lot of time to tease out and address sensitive issues and can seem daunting to many families.
• Many carers believe that all sorts of circumstances will change between the planning and the implementation of any plan; which can make all the effort seem worthless.
• Developing a support network to oversee and sustain a plan seems like an insurmountable obstacle. Fear of asking for support and being rejected or having lost a broad social network due to care responsibilities can mean that establishing and sustaining such a network requires a delicate balance and extensive effort and resources.
• There are many obstacles in attempting to implement a plan - financial, legal, property and insurance systems all make it hard to implement a plan that replaces the extensive care provided over many years.
  "Planning too early is also difficult as rules and regulations change as well as what is available."

Single Issues

Other issues raised in individual submissions included: philosophical differences between families and policy makers around congregate care; and the quality of accommodation services.

Question 2. What could be done to encourage private provisions within families?

The concept of private provision did not appear to be well-understood. Most of these responses provided information about what would enable family members to continue to care in the present without burning out; rather than focussing on the future.

Key suggestions in response to Question 2 (from submissions)

Develop planning and information services (14)

• An information/consultancy service to help guide families through the maze of planning; including counselling for family members as they deal with sensitive and challenging issues. Services should be practical, easy to understand and tangible.
• Connect families thinking about succession planning up with other families who have already started or undertaken the process.
• Legal advice on tenancy and other support issues.
• Education and training for carers covering the complexity of succession planning.
  "...a funding strategy aimed at supporting vision-driven, family focused, succession planning initiatives."

Special Disability Trust (9)

• The SDT was considered a good example of how to encourage private provision.
  "the SDT ...is a great beginning."

Provide financial planning and support (7)

• Offer budgeting and financial management skills and training to families with children with disabilities as an early intervention option.
• Initiating an innovative savings scheme like the Benevolent Society's Saver Plus could encourage private provision by providing incentives to save.
• Some arrangement whereby families could put aside funds throughout their life to provide future care for the person with a disability, including through salary-sacrificing.
• A Superannuation-type scheme.

There should be no expectation of private provision (3)

• Governments should not assume that families have the capacity make private provision; nor should they move away from their responsibilities to people with disabilities.
  "The government is just relinquishing delegation of duty (sic)."

More capacity for hybrid models (3)

• Ways need to be found to enable families to provide funding and to have services match this for example by providing accommodation whilst services provide ongoing support.
• Other hybrid models to consider include services which manage transition - whereby some time is spent in the service and some at home; easing the transition process.
  "Getting the house is the easy part. But where does the support come from?"

Single Issues

Other issues raised in individual submissions included: relaxing immigration provision to allow extended family members to enter as carers; enabling earlier access to services and support for Visa holders; more independent living skills schemes; a shift from crisis management to long-term planning needs to occur within agencies; tax-breaks for people directly contributing to care and support provided by a charitable organisation; and a Parliamentary Inquiry to examine impediments to families making private provision.

Question 3. Are other informal arrangements or schemes needed to assist parents or carers who wish to provide for their child with disability over time?

This question did not appear to be well understood and many "informal" arrangements were strongly linked to, or dependent on, government funding. A number of submissions indicated that informal didn't work - given the multiple demands on other family members and the often geographic distance between them. Others highlighted that given the time and other constraints on ageing carers, that even informal supports may need some formal guidance and/or supervision. As with Question 2 above, many suggestions were linked to improving the lives of carers now; rather than planning for the future.

Key suggestions in response to Question 3 (from submissions)

Better planning information and support (13)

• The booklet "Planning for the Future - People with Disabilities" is considered a valuable starting point, but there was a general view that very few families could manage the process on their own with only the booklet as a guide.
• Financial and legal advice and information should be more readily available and accessible in easily understood formats.
• Case manager roles should have more hours to be able to dedicate to this function.
• Seed funding for schemes such as PLAN (Planned Lifetime Advocacy Networks) and PIN (Planned Individual Networks). The models used do not require recurrent government funding. Once they are well-established, families can own and maintain them.
  "...for example an information/consultancy service to advise people on what they could do and to guide them through the maze of future planning."

Encourage transition support including hybrids (8)

• Encourage greater independence through flexible respite care (regular and increasing), enabling the person with disability to make more contacts and establish other support systems.
• Brokerage or direct client funds with flexible guidelines to purchase care and support could enable more informal arrangements.
• Services that allow family involvement to continue - hybrids that can accommodate private provision alongside government-funded support.

Increase family supports (6)

• Funding should be provided for "family to family" information and support services or family support groups.
• Families need access to a facilitator who can help them develop a life plan and help review the plan regularly. Part of this plan could help families develop informal support networks that complement and strengthen formal support services.
• Circles of Support or Circles of Friends are welcomed; and whilst they are "informal" networks of a kind, they probably need some sort of guidance or facilitation to become established and to sustain them. This is in part due to carers' reduced social networks, the time and effort needed to coordinate such a group, and many carers' preference not to ask for outside help.
  "...provide the means to set up Circles of Support and networks around the children."

Financial changes (4)

• Increase Carer Allowance, ensuring that more family income is available for savings and wealth creation.
• Change the superannuation rules to allow superannuation to be released early for the support of a person with disability.
• Enable people to salary-sacrifice (pre-tax) into a future accommodation fund.
• Costs of disability should be tax-deductible.
• Bond/entry fees to accommodation services should be treated the same as aged care accommodation contributions.

There should be no assumption of ongoing informal support (4)

• Whilst there should be room for families to continue to play a role and provide support, governments should not assume that siblings, other family members or friends are willing or able to provide full-time care.
  "The provision of future planning for the care of a family member with a disability should not involve the expectation that another family member take over the personal and financial responsibility or the care and support of the person."

Question 4. Are there innovative models of accommodation that would assist parents and families make provisions for their child with a disability?

Responses were disparate, diffuse and not clearly focused on making future provision. Eighteen submissions provided the names of accommodation services and/or models which they considered innovative (see Appendix A); but not all of these would assist parents make future provision.

Key suggestions in response to Question 4 (from submissions)

Accommodation needs to be local, flexible and available (9)

• The most common request around accommodation was that it be local, flexible and available.
• Flexibility is vital in response to individual needs and also changes in circumstances. It is also needed to assist with transition periods.
• Being in a familiar community with as many local, social and community support as possible is far better than being removed and isolated from these supports.
  "The need for supported accommodation is NOW, not when we can no longer provide care"
  "Desirable models of accommodation incorporate choices - variety of accommodation available, flexible services, choice of location, choice of service provider."

Cluster Housing (8)

• Small individualised living units in a secure estate with onsite nursing/care personnel are considered desirable.
• Retirement villages for 20-30 people with on-site support.
• Families and organisations are investigating or have developed cluster-housing models where several houses or units are built on one site and support staff move between units to provide services.
  "Cottages with central services and adequate 24-hour staff, on call even for independent clients."

Co-Residency (4)

• Shared rental or co-residency options where the person with the disability shares the premises with another person who can provide support to meet the individual's needs (the person with the disability owns or leases the property).
  "Volunteer housemate model = housemate lives in rent-free."

Living "independently" in the community (4)

• The best option for some respondents was for people with disabilities to be living in their own home in their own community; and not being encouraged to join some form of communal, cluster or shared accommodation.
• A willingness to explore the possibilities and options was preferred so families were not forced to choose from the existing "menu" of accommodation support services.
  "...models /approaches that build a life for the person with a disability that is congruent with ordinary lives in the community."

Hybrids - accommodation provided, ongoing support purchased (3)

• Families building a separate residence or granny flat on the family property for the family member to live an independent life - needs support of local government and state government planners for subdivision applications. Ongoing support funding is also needed.

Attendant care models (3)

• The allocation of funds to an individual to enable them to purchase the type, quantity and variety of support needed would enable many to stay in their own home.
  "People have an entitlement and the ability to buy their own support."

Single Issues

Other issues raised in individual submissions included: forums for families to creatively explore options; establishing co-operatives; and reimbursing the costs of visiting when someone is placed away from their home.