Preliminary Pages
Foreword
Carers – usually spouses, parents, grandparents, children,
siblings and sometimes friends or neighbours – have asked to be heard – to have
a voice of their own. So when the Committee embarked on this Inquiry into
better support for carers, it clearly indicated that its objective was to learn
more about the needs of carers from the experts – that is from carers
themselves. And carers responded. Through written submissions to the Inquiry,
and through participation in public hearings, more than 1300 carers shared
their very personal and often distressing experiences with the Committee.
Many carers have observed that it is not possible for anyone
to understand what caring entails unless they are, or have been, a carer – that
reality is not disputed. However, thanks to the generosity and candour of so
many carers, the Committee has been able to gain a degree of insight. The
Inquiry’s body of evidence clearly illustrates the profound physical, emotional
and financial effects that providing care has on carers and on their families.
Becoming a carer is not a choice. Some people find that they
are thrust into the role without warning after the birth of a child with an
illness or disability, or following a traumatic event or accident involving a
loved one. For others, becoming a carer is a more gradual process, though
ultimately equally devastating. When does a husband, or a wife, recognise that
they have also become a carer for their partner with dementia for example?
While every caring situation is unique, the love, grief, guilt, fear, anger and
frustration, coupled with sheer physical and mental exhaustion are all part and
parcel of carers’ lived experiences.
Despite the uniqueness of each caring situation described in
evidence to the Inquiry, several consistent themes have emerged. The Committee
has heard loud and clear from carers that they want choices – choices for
themselves, for the people they care for and for their families. The Committee
has also been reminded repeatedly that the needs of carers and those they care
for are inextricably bound. While the carers are the focus of this Inquiry, the
Committee has sought to achieve a balance in the report that reflects the
interrelationship of the needs of carers and care receivers without
transgressing the Inquiry’s terms of reference.
Over the years, the shift from institutional care to care in
the community has greatly increased reliance on informal care provided by
family and friends. In the absence of adequate support, carers are already in
crisis. Emerging demographic and social trends are predicted to result in
larger numbers of people requiring care and smaller numbers of people able and
willing to provide it. Existing pressures on systems of support for carers
which have been building over decades are therefore projected to increase. This
means that action needs to be taken urgently.
With this in mind, the Committee has given consideration to
diverse options for reform to address deficiencies in the current systems of
support for carers. In some areas, such as respite care and in-home assistance,
the Committee has recommended an increase in expenditure so that supply of
services more closely matches demand.
Consideration has also been given to options for the more efficient
use of existing resources. To this end, some recommendations have called for a
reduction in the red tape associated with accessing some forms of carer
support, and for greater cooperation across jurisdictional and portfolio
divides to encourage the development of more coherent and coordinated systems.
The Committee has also considered the case for significant
fundamental reform. Of particular note, is the recommendation for an
examination of income support for carers to determine whether the system of
carer payments can be restructured to better reflect the level of care
provided. In addition, the Committee has also recommended consideration of
increasing access to individualised or self-managed funding packages to provide
carers with greater choice and flexibility to purchase the services they need.
Importantly, the Committee understands that with adequate
levels of appropriate support in place, most carers wish to continue to provide
care for as long as they feel able to do so. It is therefore in the best
interests of all concerned – carers, care receivers, governments and society –
to share the responsibility of providing care more evenly. If realised, this
will allow carers and their families to participate more fully in society
through engagement with education, employment and social activities.
In concluding, I would like to extend my sincere thanks to
all those carers who have contributed to this Inquiry. It is your experiences,
described in your own words that have provided the foundation for this report
and its recommendations. I also thank the Deputy Chair, the Hon Judi Moylan MP,
and the other Members of the Committee for their participation and commitment
to the Inquiry.
As Chair of the Committee it is my view that many of the
report’s recommendations are a starting point only, providing a baseline for
more fundamental and significant reforms to systems of support for carers. In
considering the report, I urge the Australian Government and others to look
beyond the specifics of the recommendations and to also consider their context and
intent – that is to significantly improve the lives of carers and those they
care for. Importantly, implementation of reform will be key to effecting
meaningful change. It is my sincere hope that this report and its
recommendations will act as a stimulus for action.
Ms
Annette Ellis MP
Chair
Membership of the Committee
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Chair
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Ms Annette Ellis MP
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Deputy
Chair
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The Hon Judi Moylan MP
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Members
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The Hon Tony Abbott MP
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Mrs Louise Markus MP (until 25/9/08)
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Ms Jodie Campbell MP
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Mrs Sophie Mirabella MP (from 10/11/08)
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Ms Julie Collins MP
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Mr Scott Morrison MP (from 25/9/08)
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The Hon Sussan Ley MP(until 10/11/08)
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Mr Brett Raguse MP
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Ms Kirsten Livermore MP
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Mr Chris Trevor MP
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Committee Secretariat
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Secretary
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Mr James Catchpole
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Inquiry
Secretary
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Dr Alison Clegg
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Research
Officers
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Ms Siobhan Carrigan (from 8/9/08)
Ms Leila Jordan (until 27/8/08)
Ms Belynda Zolotto
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Administrative
Officers
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Ms Gaye Milner (until 13/2/09)
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Ms Tarran Snape
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Terms of reference
Carers play a vital role in sustaining Australia’s current system of community-based person-centred care. However, they are often
at increased risk of becoming socially isolated from their peers and
disconnected from mainstream employment. Many carers also have significantly
worse health outcomes than the general population (both in terms of physical
health and psychological wellbeing) and endure problematic access to services
and support. Carers also often face increased financial pressures, having
limited opportunities to accrue savings, accumulate superannuation and save for
retirement.
To obtain an improved understanding of the challenges facing
carers and their support needs, the committee will inquire into and report on:
- the role and contribution of carers in society and how
this should be recognised;
- the barriers to social and economic participation for
carers, with a particular focus on helping carers to find and/or retain
employment;
- the practical measures required to better support carers,
including key priorities for action; and
- strategies to assist carers to access the same range of
opportunities and choices as the wider community, including strategies to
increase the capacity for carers to make choices within their caring
roles, transition into and out of caring, and effectively plan for the
future.
In examining each of these issues, the committee will also
inquire into the specific needs of particular groups within the caring
population including new carers, younger carers, older carers, Indigenous
carers and those with multiple care responsibilities.
For the purpose of this inquiry carers are defined as
‘individuals providing unpaid support for others with ongoing needs due to a
long-term medical condition, a mental illness, a disability or frailty’.
List of abbreviations
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ABS
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Australian Bureau of Statistics
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ACAT
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Aged Care Assessment Team
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ACT
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Australian Capital Territory
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ACTU
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Australian Council of Trade
Unions
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AIHW
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Australian Institute of Health
and Welfare
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ATAPS
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Access to Allied Psychological
Services
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CACP
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Community Aged Care Package
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CALD
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culturally and linguistically
diverse
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CAP
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Carer Adjustment Payment
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CENA
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Carer Eligibility and Needs
Assessment
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COAG
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Council of Australian Governments
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CSTDA
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Commonwealth State Territory
Disability Agreement
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CYCLOPS
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Connecting Young Carers to Life
Opportunities and Personalised Supports
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DEEWR
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Department of Education,
Employment and Workplace Relations
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DIG
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Disability Investment Group
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DoHA
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Department of Health and Ageing
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DSP
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Disability Support Pension
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DVA
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Department of Veterans’ Affairs
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EACH
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Extended Aged Care at Home
package
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EACHD
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Extended Aged Care at Home
Dementia package
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FaHCSIA
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Department of Families, Housing,
Community Services and Indigenous Affairs
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GP
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general practitioner
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HACC
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Home and Community Care program
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HCDSMC
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Health, Community and Disability
Services Ministerial Council
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HREOC
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Human Rights and Equal
Opportunities Commission
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NATSEM
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National Centre for Social and
Economic Modelling
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NDA
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National Disability Agreement
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NDIS
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National Disability Insurance
Scheme
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NDS
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National Disability Strategy
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NES
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National Employment Standards
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NNAAMI
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National Network of Adolescent
and Adult Children who have a Mentally Ill Parent
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MND
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Motor Neurone Disease
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NRCP
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National Respite for Carers
Program
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NSW
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New South Wales
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PBS
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Pharmaceutical Benefits Scheme
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PCA
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Palliative Care Australia
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PM&C
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Department of Prime Minister and
Cabinet
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SA
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South Australia
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SDAC
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Survey of Disability, Ageing and
Carers
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SDT
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Special Disability Trusts
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SPP
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Specific Purpose Payments
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TOCC
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Taskforce on Care Costs
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WA
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Western Australia
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List of recommendations
Recommendation 1
That the Treasurer direct the Australian Bureau of Statistics,
either through an extension to its Survey of Disability, Ageing and Carers or
through the development of an alternative carer specific survey, to expand the
information it collects on carers to include information on:
n secondary carers;
n carers providing episodic
care;
n carers providing
palliative care; and
n carers aged 15 years and
under.
The Australian Bureau of Statistics should also consider
increasing the frequency of the Survey of Disability, Ageing and Carers to
three yearly intervals.
Recommendation 2
That the Australian Government, through the Department of
Families, Housing, Community Services and Indigenous Affairs and the Department
of Health and Ageing support a national community education campaign to promote
a better understanding of the role and needs of carers, and an appreciation of
the contribution that carers make to society.
The campaign should also include components to promote
increased awareness of their role among ‘hidden’ carers who may not readily
self-identify and to address the concerns of carers who may be reluctant to
disclose their role to others.
Recommendation 3
That the Minister for Families, Housing, Community Services
and Indigenous Affairs and the Minister for Health and Ageing propose to the
Health, Community and Disability Services Ministerial Council (HCDSMC) that the
Australian Government and each jurisdiction review existing legislation and
policy relating to health and community care to ensure that carers are
adequately recognised.
If legislation affecting carers falls beyond the jurisdiction
of HCDSMC then it should be referred to the appropriate ministerial council for
review.
Recommendation 4
That the Minister for Families, Housing, Community Services
and Indigenous Affairs seek the Health, Community and Disability Services
Ministerial Council to develop a nationally consistent carer recognition
framework, comprising:
n national carer recognition
legislation, which complements state and territory carer legislation; and
n a national carer strategy
which builds on and complements state and territory carer policies.
Recommendation 5
That the Department of Prime Minister and Cabinet establish a
national office for carers, either within the Office of Work and Family or as a
new office within the Department.
That the Australian Government nominate a lead Minister to be
responsible for overseeing the development of nationally coordinated carer
legislation, policy, programs and services so that these are effectively linked
across all levels of government and portfolios.
Recommendation 6
That the Australian Government consider consolidating
portfolio responsibility for people with disabilities, people with mental
illness, the frail aged and their carers into a single Australian Government
department.
Recommendation 7
That the Minister for Families, Housing, Community Services
and Indigenous Affairs and the Minister for Health and Ageing, seek agreement
through the Health, Community and Disability Services Ministerial Council to
extend the Access Points Demonstration Projects to include disability services
and community mental health services.
Recommendation 8
That the Australian Government make locally based peer support
carer groups a priority within existing community grants programs available
across portfolios.
Recommendation 9
That the Minister for the Department of Families, Housing,
Community Services and Indigenous Affairs fund the expansion of the MyTime Peer
Support Program to:
n include parents of school
aged children with disability; and
n increase geographical
coverage.
Recommendation 10
That the Minister for Families, Housing, Community Services
and Indigenous Affairs and the Minister for Health and Ageing request that the
Health, Community and Disability Services Ministerial Council develop a
national strategy to address the training and skills development needs of
carers.
Recommendation 11
That the Minister for Families, Housing, Community Services
and Indigenous Affairs and Minister for Department of Health and Ageing direct
their Departments to review the adequacy of case management or care
coordination for carers and care receivers using community care, aged care,
disability and community mental health services.
Recommendation 12
That the Minister for Families, Housing, Community Services
and Indigenous Affairs extend the National Disability Advocacy Program to:
n provide family advocacy
services which better recognise the role of carers providing individual
advocacy on behalf of, and with, care receivers; and
n provide formal advocacy
for carers in their own right when this is required.
Recommendation 13
That the Minister for Health and Ageing review arrangements
for systemic carer advocacy provided through Carers Australia and the network
of state and territory Carer Associations.
The review should examine the extent to which arrangements for
systemic advocacy represent the diversity of carer groups and consider whether
these arrangements might need to be extended or reformed.
Recommendation 14
That the Attorney-General, in conjunction with the Minister
for Families, Housing, Community Services and Indigenous Affairs and the
Minister for Health and Ageing, investigate whether the National Privacy
Principles and the Information Privacy Principles, and equivalent provisions in
state and territory privacy and mental health legislation, adequately allow
carers to be involved in the treatment of the individuals for whom they care.
The Minister for Families, Housing, Community Services and
Indigenous Affairs and the Minister for Health and Ageing promote to health and
community care providers the importance of involving carers in the treatment
and services for those receiving health and community care services.
Recommendation 15
That the Attorney-General promote national consistency and
mutual recognition governing enduring powers of attorney and advanced care
directives to the Standing Committee of Attorneys-General.
Recommendation 16
That the Minister for Families, Housing, Community Services
and Indigenous Affairs and the Minster for Health and Ageing and the
Attorney-General fund a national information campaign to raise awareness about
the need for, and benefits of, enduring powers of attorney and advanced care
directives in the general community and among health and community care
professionals.
Recommendation 17
That the Minister of Families, Housing, Community Services and
Indigenous Affairs examine how carer payments may be restructured to better
reflect differences in the levels of care provided.
Recommendation 18
That the Australian Government significantly increase the base
rate of carer payments.
Recommendation 19
That the Minister for Families, Housing, Community Services
and Indigenous Affairs examine and implement the most appropriate option(s) to
reduce the disincentive for carers to earn supplementary income.
Recommendation 20
That the Minister for Families, Housing, Community Services
and Indigenous Affairs direct the Department of Families, Housing, Community
Services and Indigenous Affairs to review its assessment for Carer
Payment/Allowance (adult) with a view to:
n extending the range of
health and allied health professionals who are authorised to verify the
applicant’s claim;
n enabling acceptance of
recent supporting documents that may already be held by the carer to verify the
claim where these documents provide a sufficient level of detail regarding the
care needs of the care receiver;
n developing a new
assessment process that acknowledges the level of support provided by carers of
people with intellectual disability, mental illness or with challenging
behaviours. The assessment should also have regard to the episodic nature of
some conditions; and
n reviewing the purpose and
frequency of review processes, particularly in circumstances where it is
evident the needs of the care receiver will not decrease over time.
Recommendation 21
That the Minister for Human Services, in consultation with the
Minister for Families, Housing, Community Services and Indigenous Affairs,
direct their Departments to review Centrelink’s application processes for
income support for carers and care receivers with a view to streamlining
processes and simplifying the content and design of its claim forms.
The review should also include consideration of how
Centrelink’s data capture and management systems might be improved to reduce
the need for carers to provide the same information on multiple occasions.
Recommendation 22
That the Minister for Human Services direct Centrelink to
establish a dedicated Carer/Disability Unit with staff to provide specialist
advice to carers and care receivers, including those with complex care and
family issues.
Recommendation 23
That the Minister for Families, Housing, Community Services
and Indigenous Affairs through the Department of Families, Housing, Community
Services and Indigenous Affairs fund a survey to measure the financial costs to
households of caring for people with disability.
Recommendation 24
That the Minister for Health and Ageing increase the level of
the subsidy available to eligible clients for the purchase of continence aids
through the Continence Aids Assistance Scheme.
Recommendation 25
That the Minister for Families, Housing, Community Services
and Indigenous Affairs negotiate through the National Disability Agreement to
extend considerations in relation to developing more consistent access to aids
and equipment, to also include consideration of a more consistent framework to
assist with capital costs incurred as a result of disability and care, such as
vehicle and home modifications.
Recommendation 26
That the Treasurer ensure that the review of Australia’s
Future Tax System include consideration of options for tax concessions or
rebates to apply to items associated with disability and caring such as
medication, therapy, aids and equipment.
Recommendation 27
That the Minister for Families, Housing, Community Services
and Indigenous Affairs advocate for Health Care Cards to be issued under the
same means test as Carer Payment to those receiving Carers Allowance.
Recommendation 28
That the Minister for Families Housing, Community Services and
Indigenous Affairs direct the Department of Families Housing, Community
Services and Indigenous Affairs to investigate the benefits of introducing a
national carer card for recipients of Carer Payment and Carer Allowance in
order to verify the relationship between a primary carer and a care receiver.
Recommendation 29
That the Minister for Families, Housing, Community Services
and Indigenous Affairs and the Minister for Health and Ageing seek agreement
through the Health, Community and Disability Services Ministerial Council to
expand the nationally consistent assessment process based on the Carer
Eligibility and Needs Assessment-Revised questionnaire.
This will need to ensure the inclusion of carers accessing
services offered through the Department of Families, Housing, Community
Services and Indigenous Affairs and the state and territory governments.
Recommendation 30
That the Minister for Families, Housing, Community Services
and Indigenous Affairs and the Minister for Health and Ageing address the
shortages of health and community care services for people living in regional
and remote locations.
Recommendation 31
That the Minister for Families, Housing, Community Services
and Indigenous Affairs fund research into the profiles and specific needs of
Indigenous carers.
Recommendation 32
That the Minister for Families, Housing, Community Services
and Indigenous Affairs and the Minister for Health and Ageing examine the
adequacy of culturally appropriate community care services funded by the
Australian Government for Indigenous carers, particularly for those living in
remote areas, with the intention of increasing the accessibility and
availability of those services.
Recommendation 33
Recognising the ageing demographic of the carer population and
the increased longevity of many care receivers, that the Minister for Families,
Housing, Community Services and Indigenous Affairs and the Minister for Health
and Ageing increase capital and recurrent funding for respite care services
funded by the Australian Government as a matter of urgency to more closely
match demand across the country.
Particular attention should be paid to improving the:
n availability and
accessibility;
n affordability;
n responsiveness to the
needs of both carer and care receiver of respite services; and
n responsiveness to the
needs of carers and care receivers in living regional, rural and remote areas.
Recommendation 34
That the Minister for Health and Ageing and the Minister for
Families, Housing, Community Services and Indigenous Affairs increase funding
for in-home assistance for carers in order to more closely meet demand.
Recommendation 35
That the Minister for Families, Housing, Community Services
and Indigenous Affairs and the Minister for Health and Ageing undertake pilot
studies to test the potential for the Australian Government’s funding for carer
respite and in-home assistance to be re-allocated directly to carers through
‘individualised funding programs’ (also known as ‘consumer directed care’ and
‘self managed funding’).
Recommendation 36
That the Minister for Families, Housing, Community Services
and Indigenous Affairs and the Minister for Health and Ageing seek agreement
through the Health, Community and Disability Services Ministerial Council to
collect nationally consistent data to more accurately determine the number of
carers, their profile and the level of unmet need for community based carer
support services.
Recommendation 37
That the Minister for Education, Employment and Workplace
Relations examine options to build capacity in the community care workforce,
particularly initiatives to encourage retention of trained workers in the
sector.
Recommendation 38
That the Minister for Families, Housing, Community Services
and Indigenous Affairs through the Health, Community and Disability Services
Ministerial Council, encourage states and territories to provide additional
funding for disability support workers in long day care, out of hours care and
school holiday care to improve access for employed carers.
Recommendation 39
That the Minister for Health and Ageing and the Minister for
Families, Housing, Community Services and Indigenous Affair expand any
continuation of the Employed Carers Respite Initiative to provide extended respite
and support for all working carers, including those who provide care to people
with disabilities or mental illness who are under the age of 65 years.
Recommendation 40
That section 65(1) of the Fair Work Act 2009 be amended
to extend the right to request flexible working arrangements to all employees
who have recognised care responsibilities, including to those who are caring
for adults with disabilities, mental illness, chronic illness or who are frail
aged.
Recommendation 41
That the Minister for Education, Employment and Workplace
Relations ensure that employment service providers:
n consider the specific
needs of carers seeking suitable employment; and
n encourage and support
employers to provide employment opportunities for carers.
Recommendation 42
That the Minister for Education, Employment and Workplace
Relations ensure that employment service providers consider the skills
development and training needs of carers, particularly long-term carers, when
developing plans to assist those wishing to enter or re-enter the workforce
after a period of absence.
Recommendation 43
That the Minister for Families, Housing, Community Services
and Indigenous Affairs direct the Department of Families, Housing, Community
Services and Indigenous Affairs to increase the number of hours of work,
volunteering or study that those receiving Carer Payment can undertake.
Recommendation 44
That the Minister for Education, Employment and Workplace
Relations direct the Department of Education, Employment and Workplace Relations,
in association with state and territory education departments, to develop
flexible policies to make it easier for students to combine education with
caring.
Recommendation 45
That the Minister for Families, Housing, Community Services
and Indigenous Affairs direct the Department of Families, Housing, Community
Services and Indigenous Affairs to extend the eligibility criteria for its
Respite for Young Carers at Risk Program to include assistance for more than
one young carer in a family unit where the care responsibilities are shared.
Recommendation 46
That the Minister for Health and Ageing direct the Department
of Health and Ageing to provide a preventative health care program targeted at
carers. This could be achieved by extending the Enhanced Primary Care Program
to include carers who receive Carers Payment and/or Carer Allowance as an at
risk population group requiring intervention under this program.
Recommendation 47
That the Minister for Families, Housing, Community Services
and Indigenous Affairs direct the Department of Families, Housing, Community
Services and Indigenous Affairs to review the temporary cessation of care
requirements for Carer Payment and Carer Allowance recipients, particularly in
relation to:
n the adequacy of the 63
days of respite per year particularly in comparison to minimum conditions of
paid employment; and
n the requirement of carers
to use all or part of the allowable period of time to cover periods of time,
when as a result of illness, they are unable to provide care.
Recommendation 48
That the Minister for Health and
Ageing expand the National Carers Counselling Program to better meet the demand
for counselling services by carers.
Recommendation 49
That the Minister for Health and Ageing direct the Department
of Health and Ageing to raise awareness among General Practitioners of the high
incidence of mental health problems among carers and their families and of the
options available for support.
Recommendation 50
That the Minister for Social Inclusion nominate carers as an
early priority for social inclusion on the social inclusion agenda and with the
Australian Social Inclusion Board.