Chapter 3 A National and Strategic Approach to Carer Recognition and Policy
3.1
This chapter examines the role and contribution of carers to society and
identifies the need for greater formal recognition. The chapter will:
n provide information
on the caring role and consideration of the contribution that carers make to
society;
n consider the
importance of carer recognition and strategies to promote improved carer
recognition through:
§
initiatives to increase community awareness of carers and promote
a better understanding of their needs;
§
review of existing legislation and policies that impact on carers;
and
§
the introduction of national carer recognition legislative and
policy frameworks.
The Role and Contribution of Carers
3.2
Each caring situation has unique aspects reflecting the circumstances of
the carer, the care receiver and the family. The association between carers and
care receivers covers the spectrum of family relationships and friendships. Carers
provide care for children and adults with a wide range of health and mental
health conditions, disabilities and the frail aged. For some, the caring
experience may span months or years, for others it spans decades and may
involve providing care for one or more care receivers at various times.
3.3
Through written submissions and verbal statements to the Inquiry, over
1200 carers have shared their experiences, often describing the range of tasks
that they are required to undertake on a daily or regular basis, and the
challenges that they encounter in providing care.[1]
While some carers have described the rewards associated with providing care[2],
many have indicated that providing care, even for a loved one, is frequently
demanding. The caring role is often a 24 hour a day, seven days a week
responsibility.[3] Ms Sheralyn Hughes who cares for her 20 year old son with a severe autism spectrum disorder
described her role in the following stark terms:
Endless, thankless, poor, a no win situation, desperate,
extremely depressing and very bleak.[4]
3.4
Another carer, Ms Michela Cardamone, who cares for a family member with
a mental illness described her role as follows:
Terrifying, traumatic, overwhelming, confusing, stressful,
isolating, lonely, undervalued, under resourced, not understood, unsupported,
unheard, invisible, frustrating, depressing, emotionally draining, physically
exhausting.[5]
3.5
While it is clear that no two caring situations are the same, the
excerpts below illustrate the breadth and intensity of the caring role.
Ms Joy Roze
– carer for her son with autism spectrum disorder
Carers have a
diverse role to play in their caring position dependant on the type of
disability involved. There can be heavy lifting or restraint management
involved, sleep deprivation, endless appointments to attend, medication to
collect and administer, behavioural management to implement, adjust and uphold,
extra home duty chores such as more frequent changing of bed linen, cleaning,
specialised food preparation and extra laundry.
The Carer's
role is constant. The Carer is on call 24 hours per day, seven days per week
with most of us receiving little or no relief from our caring role.[6]
Ms Kerryn McDonall – carer for her two daughters with disabilities
To care for all
my daughters' personal care, medical care, equipment needs, as well as cooking,
cleaning, washing, shopping etc etc. These needs are for a lifetime, my eldest
daughter is 25 and I am still changing nappies, cleaning up the mess she has
made, trying to work out what she wants, putting things away so she doesn't
break them, as well as bathing, dressing, cutting up her food, cleaning teeth,
doing her hair, putting her shoes on again and again, putting on music in the
hope she may stay still for a few minutes.
My 16 year old
has a physical disability so I do most of the same for her but with more
lifting. Then there are appointments with doctors, specialist, dentists,
physios, schools, case workers (who keep changing), to arrange and attend.
Another role is
to advocate for my daughters and to find services that meet their needs this
takes a lot of emotional energy and time often with very limited results.[7]
Ms Careen Dew – young person assisting with care for her 9 year old brother
with multiple disabilities
I am 21 years
old and, together with my mum and my 18 year old brother, I care for my younger
nine-year-old brother, Alec, who suffers from multiple disabilities which have
left him unable to speak, eat, walk and even smile. My caring role for him is
quite endless. It also extends to caring for his twin brother who is not
disabled but, because Alec has had over 150 hospital admissions and with my mum
by his side, I am pretty much the second parent of the house who looks after
everything else whilst also trying to work part-time and study law down here in
Sydney.[8]
Mr Francis Horgan – carer for his wife with diabetes
As a Carer, I
feel that my role is important in facilitating the health and happiness of my
wife who is eighty years old: has Type 2 Diabetes for more than ten years: as
well as heart/blood pressure problems: loss of balance occasionally and suffers
from shortness of breath. I assist my wife in her daily living activities;
outside shopping; driving activities and companionship; twenty four hours per
day. This support allows my wife to enjoy an independent lifestyle in her own home.[9]
3.6
Despite the diversity of caring situations many carers also share common
experiences. In drawing a broader picture of common experiences, Ms Deirdre
Croft identified the following four dimensions of the caring role:
n Physical
dimensions of caring (e.g. lifting, bathing, feeding, managing medication,
hygiene requirements, behavioural management etc).
n Practical
dimensions of caring (e.g. financial and administrative requirements,
providing transport, assistance with shopping, domestic maintenance etc).
n Emotional
dimensions of caring (e.g. based on a personal relationship, concern for,
and commitment to, the wellbeing of the person with disability, advocating for
and representing their needs etc).
n Moral/ethical
dimensions of caring (e.g. as a way of living life compassionately with
concern and practical consideration for the needs and vulnerabilities of
others).[10]
3.7
In considering the contribution that carers make to society, many carers
firstly describe the direct benefits for the care receivers. Carers emphasised
the importance of being able to provide the best possible quality of life for
the care receiver and helping to maintain a level of independence thereby preventing
early or inappropriate entry into institutional or residential care.[11]
Many carers also noted that by providing unpaid informal care in their own
homes, they are saving governments significant amounts of money.[12]
For example, as explained by Ms Saara Arnoldy, a carer of over 30 years for her
son with multiple disabilities:
I have been called a hero! I never
wanted to be one. I never wanted to be a divorced mother to a child with
disabilities. I love my son, so there is only one thing to do, to look after
him the best I can. The contribution I have made towards my son's welfare is
immeasurable. The contribution I have made to society in monetary form can be
calculated in very large figures.[13]
3.8
There have been several estimates of the imputed economic value of the informal
care provided by carers. In 2005, Access Economics estimated the value of the
opportunity cost, that is the income forgone by carers spending time providing
care rather than undertaking paid work, to be $4.9 billion for that year.[14]
Using the replacement valuation method, that is the cost of buying the
equivalent number of hours of care from the formal care sector, Access
Economics estimated that the economic value of informal care to be $30.5
billion for that year.[15] The Australian Institute
of Health and Welfare provides another estimate of the economic value of unpaid
care (2005-06) for people with disabilities, including those who need
assistance because of old age as $27.4 billion.[16]
3.9
Although the estimates vary to some degree, the conclusion is that the current
mix of informal and formal care arrangements results in significant savings for
governments. However, these savings to governments have come at a cost to
carers and their families. As noted by ANGLICARE (Sydney):
Informal care combined with some community-based care costs
society far less than institutionalised care. It is the informal care component
that reduces the cost of care, however this is the form of care that is least subsidised.
Government benefits to informal carers were estimated at 35% of the opportunity
cost to carers in 2005.[17]
3.10
Importantly, as indicated by many submissions the contribution of carers
to Australian society can not be measured in purely monetary terms. More
broadly carers also contribute by:
n building and
maintaining family life and relationships;
n promoting social
inclusion for people with disabilities, mental illness, serious medical
conditions and for the frail aged; and
n supporting community
cohesion.
Carer Recognition
3.11
Despite their significant contribution to society, many carers have stated
that they feel their role is still not fully understood or appreciated by
governments or by the wider community, including professional groups that have
significant and frequent interaction with carers (e.g. health professionals,
community service providers). As a consequence, many consider that the
contribution of carers continues to be undervalued.[18]
As observed by the Carers Support Network of South Australia:
Generally speaking, there is an appalling level of awareness
within our society of the impact of caring. The financial, social, medical
impacts are often profound and result in poverty, social isolation and poor
health of the carer. Doctors, teachers, health workers, and above all -
Centrelink workers, have poor understanding of what a day in the life of a
carer looks like.[19]
3.12
Also describing a general lack of recognition and appreciation, the
National Carers Coalition stated:
There can be little doubt that the role and contribution of
family carers is undervalued, taken for granted, exploited and clearly
sidelined by our governments and our society; by all those who should care.[20]
3.13
As one carer observed, for her and for many other carers, caring is
effectively a ‘hidden’ activity, with even family, friends and neighbours
failing to fully appreciate the demands associated with the caring role:
It is a hidden life because most of it occurs behind closed
doors. Nobody, apart from my husband and children - not my extended family or
even my closest friends and definitely not my neighbours - know what I do and
how hard I work.[21]
3.14
Time and time again carers have specified the best way to recognise carers
and to demonstrate that their contribution is genuinely valued, is through
adequate provision of practical supports and services both for carers and care
receivers.[22] Specifically, carers
have frequently called for increased levels of income support, greater
assistance with meeting the additional costs of disability and care, greater access
to community care services, particularly suitable respite, and for improved
access to services for care receivers, including a range of supported
accommodation options. The importance of demonstrating carer recognition
through the provision of adequate supports and services is illustrated by the following
statements:
Ms Deborah Edwards - carer for her severely disabled adult son
We work day in and day out, but
we're not seen as workers. We save society a 'bucket load' of money, but are
never thanked for that. We are the hidden army, as we have neither the time and
energy nor the money to participate in society to any great extent, so we are
unnoticed and easily ignored. ... a change in attitude towards Carers at a
Government level is needed. Total reform of the way financial and physical
support is delivered to us so that we are no longer 'welfare recipients' with
all the stigma that is attached to that, but partners who carry out critical
work for Government in a cost-effective way. Until then I don't believe we will
truly feel that we are valued members of society at large.[23]
Ms Narelle Hughes - carer for her adult daughter with profound intellectual and physical
disabilities
We have all heard the wonderful
words spoken by many and varied people about the great contribution carers make
in society and I am pleased that there is some recognition of my seemingly
never-ending role. However, words do not put food on the table, or compensate
carers for the loss of earnings they may have made, or help to accumulate
savings for the future, or fund a retirement which is unlikely to come anyway.
We are feted during Carers Week and given a 'bonus' in the Budget if we fight
for it. Carers of working age need to be paid a wage commensurate with the work
they do. Carers need to be recognised as workers who are providing a vital
service which would otherwise need to be provided by the Government.[24]
3.15
The Committee has become only too aware of the significant social and
economic contribution that carers make to Australian society. Clearly, given
the considerable financial and personal costs for carers themselves, the
importance of adequately recognising their contribution is fundamental. Many
carers have identified the critical importance of practical measures which
recognise the contribution of carers by providing adequate supports and
services to meet the needs of carers, care receivers and their families. Detailed
consideration of the issues associated with supports and services for carers is
presented later in the report. However, the remainder of this chapter considers
other options for enhancing carer recognition. These are:
n initiatives to
increase community awareness;
n review of existing
legislation and policy;
n the introduction of national
carer recognition legislation and policy; and
n a review of
arrangements for systemic carer advocacy.
Increased Community Awareness
3.16
A number of submissions have referred to recent media exposure that has raised
the profile of carers, highlighting their plight and the critical role that they
play in society.[25] However, some carers and
organisations have identified that there is still a need for further awareness
raising through a national publicity campaign and community education.[26]
For example, the Carers Support Network of South Australia indicated its support
for:
Public awareness campaigns about:
n the financial
contribution that Carers make to our society (billions of dollars per year);
n the role of Carers
and what they do - legitimise their role by providing information throughout
public media about their levels of skills and knowledge.[27]
3.17
Similarly, Anglicare Canberra and Goulburn also recommended a national
community awareness campaign to raise the profile of carers using electronic
and print media, billboards and community events. In making this
recommendation, Anglicare Canberra Goulburn suggested that increased community
awareness might ‘mobilise’ enhanced community support for carers, saying:
The Australian community, in general has demonstrated a great
generosity of spirit towards people who experience misfortune and those who are
disadvantaged. Specific education campaigns to help raise awareness of the
circumstances carers find themselves in, will be likely to mobilise members of
the community to show their support in practical ways.[28]
3.18
Carers Tasmania identified the following possible benefits of increased community
education on the role of carers and their contribution to society:
Greater community education is needed to help people
understand more about caring. This will have a two-fold effect: firstly, to
assist people to self-identify and self-refer to services if they have support
needs; and, secondly, to increase wider community awareness of caring needs and
promote inclusion.[29]
3.19
In addition to raising awareness in the wider community, evidence has
also identified the need for initiatives that target specific professional
groups. For example, the submission from the Queensland Government recommended:
Development and delivery of programs to raise awareness of
and responsiveness to carer's needs and issues within services, government
agencies, businesses, and educational institutions.[30]
A National Community Education Campaign
3.20
The Committee agrees that a national community education campaign to
raise the profile of carers is needed to enhance carer recognition and promote
a greater appreciation of the valuable contribution that carers make to society.
As well as validating the role of carers, a better appreciation of the
challenges associated with providing care, and a better understanding of the specific
needs of carers should promote a more inclusive and supportive society.
3.21
In addition to raising the profile of carers in the community more
broadly, the Committee agrees that there is also a need for education that
specifically targets particular sectors and professional groups. For example, a
campaign could specifically target employees in the health and community
services, education and private sectors.
3.22
As noted in chapter 2, a national community education campaign should
also seek to target those carers who may not readily self-identify as such, and
to address the concerns of those carers who may be reluctant to disclose their
role to others. Importantly the campaign should advise these carers of the government
services available to them.
3.23
An effective national education campaign will need to be tailored to the
different target groups, taking into account strategies to reach new carers,
young carers, carers from culturally and linguistically diverse (CALD) and indigenous backgrounds. Similarly, publicity targeting specific sectors or professional
groups will need to be delivered in different ways.
3.24
Although the Committee considers that a national community education
campaign is warranted, it also acknowledges that there is limited value in
raising community awareness in the absence of other measures which increase
access to supports and services for carers and care receivers. Therefore, the
Committee emphasises that its support for a national community education
campaign should be viewed as part of a proposed broader suite of reforms to
recognise carers through practical measures.
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. |
Carer Recognition through Legislation and Policy
3.26
Evidence from individuals and from organisations have emphasised the
importance of developing robust legislative and policy frameworks to raise the
profile of carers and to uphold carer rights. Several submissions have referred
to frameworks of carer legislation and policy in other countries, such as the United Kingdom, Ireland, New Zealand, Canada and Sweden.[31]
3.27
For example, Ms Mary Lou Carter notes that the United Kingdom has enacted three pieces of carer specific legislation.[32]
Between them these confer a number of rights for carers including:
n an assessment of the
carer’s ability to provide care;
n an assessment of the
carer’s own needs; and
n access to services
and information.[33]
3.28
To complement this legislation in June 2008 the United Kingdom
Government released its carer strategy Carers at the heart of 21st
century families and communities. The strategy sets out the
short-term agenda to be achieved by 2011 and a long-term vision for the future
support of carers to be achieved by 2018.[34] The essence of
the strategy is embedded in its vision statement:
Our vision is that by 2018, carers will be universally
recognised and valued as being fundamental to strong families and stable
communities. Support will be tailored to meet individuals’ needs, enabling
carers to maintain a balance between their caring responsibilities and a life outside
caring, while enabling the person they support to be a full and equal citizen.[35]
3.29
Arguing the case for a legislative basis to support carer rights in Australia, and to provide a legislative foundation for the implementation of carer policy, Carers
ACT stated:
Legislation is a critical component of social structure. It
provides a foundation of support which underpins policy development and service
provision. It outlines the rights and responsibilities of all people affected,
and it ensures their due protection under the law. Carers may feel more secure
when their rights and responsibilities are clearly set out in such a charter.[36]
3.30
In also providing its support for carer legislation and national
strategic carer policy, Carers Australia observed:
Carer legislation, carer policies and/or action plans have
been introduced in all states and territories and some overseas countries. This
action is a vehicle for enhancing and embedding recognition of carers and in
some cases conferring rights or provisions within existing legislation.[37]
3.31
With regard to the preferred legislative model Carers Australia noted
that carer recognition legislation may require reform to existing legislation,
the introduction of new legislation or a combination of both, stating:
Whether it is one act or more and/or reform to existing
legislation is a question about the best form of legislation. However to
demonstrate true recognition for the role and contribution of carers, national
carer legislation is needed.[38]
The Framework of Existing Legislation and Policy
3.32
The scope of existing legislation and policy which directly or
indirectly impacts on carers is broad. As shown in Table 3.1 some states and
territories, have already introduced specific carer recognition legislation. Some
states and territories, either in addition to carer specific legislation or as
an alternative to carer specific legislation, have carer policies in the form
of carer strategies or action plans. Through these strategies and action plans governments
articulate their commitments to carers.
Table 3.1 State and
Territory Specific Carer Recognition Legislation, Strategies and Action Plans
|
State / Territory
|
Specific Carer Recognition Legislation
|
Carer Strategy / Action Plan
|
|
Australian Capital Territory
|
No
|
Caring for Carers Policy 2003
Carers Action Plan 2004-08
|
|
New South Wales
|
No
|
Carers Action Plan 2007-12
|
|
Northern Territory
|
Carers Recognition Act 2006
|
Carers Charter
|
|
Queensland
|
Carers Recognition Act 2008
|
Carers Recognition Policy 2003
Carers Action Plan 2006-10
|
|
South Australia
|
Carers Recognition Act 2005
|
SA Carers Policy
Carers Charter
|
|
Tasmania
|
No
|
No
|
|
Victoria
|
No
|
Caring Together: a Carer Participation Action Plan 2003-08
|
|
Western Australia
|
Carers Recognition Act 2004
|
Carers Plan for Western Australia
2004-07
|
Source: Parliament
of Australia, Parliamentary Library 2009.
3.33
Evidence to the Inquiry indicates that the carer recognition legislation
and policies that have been introduced by the states and territories are generally
viewed favourably. For example, Carers Tasmania outlined the potential benefits
of carer recognition legislation as follows:
Carer charters, such as those in operation in Western Australia and in the Northern Territory have proved that legislated minimum
standards are the surest way of beginning a process of consistent compliance
across whole of government and related services. These standards set clear and
achievable guidelines for carer access to information, consultation in care
processes, and provision of information. They also provide for strategic
consultation, representation and participation in all planning matters related
to carers.[40]
3.34
Emphasising the importance of state and territory based carer specific
legislation to support carer rights and reinforce carer policy, Ms Dianne McCarthy of the Association for Children with a Disability observed:
I would like to say that a [carers] charter basically means
little or nothing unless there is legislation to back it up. There are already
some charters that currently exist and there are some efforts in this state [Victoria] to introduce a carers charter as well. But that is not backed by legislation. That is
the essence of it. One thing complements the other.[41]
3.35
In addition to the state and territory based carer recognition
legislation, carers are potentially affected by other legislation, including human
rights, equal opportunities and anti-discrimination legislation which may be international,
national, or state and territory based.[42]
3.36
Therefore, rather than introducing carer recognition legislation, some
states and territories have elected to increase carer recognition and rights
through amendments to existing legislation. For example, the NSW
Anti-Discrimination Amendment (Carers Responsibilities) ACT 2000 (NSW)
amended the Anti-Discrimination Act 1977 (NSW) to include a provision prohibiting
unlawful discrimination on the grounds of caring responsibilities.[43]
More recently through the Carer Recognition Legislation Amendment Act 2006 (ACT)
the ACT Legislative Assembly introduced amendments to the Discrimination
Act 1991 (ACT), Guardianship and Management of Property Act 1991 (ACT) and
to Human Rights Commission Act 2005 (ACT) to strengthen a number of provisions
relating to carer recognition.[44]
3.37
The introduction of state and territory based carer recognition legislation
and amendments to broader human rights and anti-discrimination legislation
suggest that recognition of carers is increasing. However, inconsistencies
between jurisdictions have prompted calls from carers and organisations for a
legislative framework that is both more robust and consistent between the jurisdictions.[45]
3.38
In addition to concerns regarding the lack of consistency in carer
recognition legislation, an issue that has frequently been raised relates to
the limitations of some legislative and policy frameworks in terms of
acknowledging carers across all government portfolio area. For example,
finance, housing, employment, education and transport. The importance of
acknowledging carers across the full range of services was emphasised by the
Disability Support Commission which noted that:
Access to other [mainstream] essential services — especially
housing, transport, education and health — is a constant struggle for many
carers.[46]
3.39
Although WA was the first state to introduce carer recognition legislation
and policy, Mr Paul Coates of Carers WA told the Committee that there is a need
to broaden the existing legislation:
We are looking for joined-up thinking in government. By that
I mean not just focusing on carers programs but looking at all areas of policy.
For example, in the area of affordable housing we
believe that carers should be taken account of in policy and
service delivery. Carers could be included as one of the priority groups in the
allocations of affordable housing policy, rental policy and arrears operational
policies to take account of carers’ needs there. In education, we believe that
awareness and recognition of carers should be endemic throughout the whole
education system, particularly regarding young carers. In the school and
education system, for example, teachers need to be made aware of the issues of
young carers and the fact that they may have young carers in their class so
that there is more flexibility in the delivery of education. We believe the
transport policy and system need to take account of carers in allowing access,
which is particularly important in regional and remote areas.[47]
The Need for Review of Existing Carer Legislation and Policy
3.40
The Committee agrees that a robust legislative and policy framework will
enhance carer recognition and provide the basis to develop policy, programs and
services that better meet the needs of carers. To date the approach to
increasing carer recognition has been on a state by state basis with some states
and territories introducing specific carer recognition legislation and/or
policies, while others have amended broader non-carer specific legislation. As
a consequence, the extent to which existing legislative and policy frameworks
address the needs of carers varies between jurisdictions.
3.41
To reduce these inconsistencies the Committee concludes that a
systematic review of existing legislation and policy, in particular in relation
to health and community care, is warranted in order to ensure carers are adequately
recognised. Given the need to achieve harmonisation across jurisdictions, the
Committee believes that consideration by the Council of Australian Governments
(COAG), through the Health Community and Disability Services Ministerial
Council (HCDSMC) is required.
3.42
However, given the breadth of legislation and associated policy that may
impact on carers, the Committee is also cognisant that some relevant items will
be outside the scope for consideration by the HCDSMC. The Committee suggests
that a review of broader legislation that impacts on carers may also need to be
considered, possibly under the auspices of COAG.
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. |
A National and Whole of Government Approach to Carer Legislation and Policy
3.44
To address concerns regarding the inconsistency of carer recognition legislation
and policy between states and territories, and to achieve greater cross
portfolio consideration of carer issues, the Committee has received evidence
which suggests that there is a need for a national and whole of government
approach to carer recognition legislation and policy.[48]
3.45
Providing her support for the introduction of national carer
legislation, Ms Valerie Simpson, a carer for over 30 years for her son with
high support needs, as well as for her two other adult children also with
disabilities, stated:
I strongly believe there should be Uniform Carer Legislation
in place throughout Australia, in this way Carers will be recognised by
governments.[49]
3.46
Another long term carer living in WA and providing care for her husband
with a degenerative neurological condition, also argued the case for national
legislation, saying:
In this state [Western Australia] we have the Carer
Recognition Act 2004 which seeks to acknowledge the valuable role of carers and
bring them into the decision making processes via consultation with them on
both service provision and strategic direction of health and disability
services.
This is a useful first stage of valuing carers and one that
the Federal government could follow to ensure that across all sections of
government, attention was paid to make relevant decisions considering people
with disabilities, chronic illness and frailty and the needs of their carers.
Federal legislation could bring parity across the states.
Federal legislation could set the stage for national
leadership on a wide range of decision making levels and policies such as:
planning infrastructure of public resources and venues which address access
issues, this equates to adequate Australian building codes provisions.[50]
3.47
The Ethnic Disability Advocacy Centre, while acknowledging state and
territory legislative advances in carer recognition, argued for national legislation
and associated policy, saying:
Each of the State governments through their Carer Recognition
Acts and policies is demonstrating a desire to support carers. However there is
still a need for a national carer’s legislation with targeted strategies and
action plans for supporting carers - especially with integration of shared
responsibilities between state and commonwealth governments, families and
communities.[51]
3.48
Carers NSW raised the importance of national carer recognition
legislation that complements state and territory legislation, stating:
Carers NSW believes national overarching legislation is
important to recognise, protect and provide equal opportunity to carers across Australia. The key to effective national carer legislation will be to ensure its
compatibility to state and territory legislation so that one does not negate
the other.[52]
3.49
Mr Dougie Herd from the Office of the Disability Council of New South
Wales called for the Australian Government to take the lead in developing
national carer legislation and policy, saying:
We need the Parliament of Australia, the Government, to give
a lead that brings together the different stakeholder interests of
people with disability and their family members, friends and
others. It brings to some kind of resolution the problems that have existed ...
between states and territories. Unless we get the balance between the states
and federal system right we will continually have a problem of people not
knowing where the lead should come from and therefore what they should expect
from different arms of government.[53]
3.50
Ms Tania Hayes, a full time carer for her husband for the past 11 years also
noted the challenges for carers that arise as a consequence of the involvement
of multiple government agencies representing various portfolio interests,
noting:
Currently carer issues cross many government programs. No
single Australian Government agency has responsibility for coordinating carer
support policies. Each of these agencies has their own priorities that often
take precedence over the interests of carers. There needs to be a co-ordinated
approach to ensure policies work together to address the range of carer needs
in a way that allows flexibility and options for individual carers and their
families.[54]
3.51
Summarising information provided by a number of Defence Force family
carers in relation to the importance of national carer policy, the submission
from the Defence Special Needs Support Group reported:
... carers felt that they were not valued nor recognised for
the contribution that they make in society. Some expressed concern that there
was no National Carers Strategy or Policy at a Federal level to recognise their
caring role. They felt that this would assist with job security, support and
appropriate service provision and provide recognition at a high level.[55]
3.52
To guide the implementation of legislated carer rights and to monitor
outcomes, evidence has also highlighted the importance of developing an
adequately resourced national carer strategy or action plan. Commenting on the
complementarity of national carer legislation and a national carer action plan,
Ms Annemarie Ashton of Carers ACT said:
To have one without the other, you would miss out on some
essential components. Having an action plan without the legislation would make
it too easy for everything to just get shelved if there was a change of
government.[56]
3.53
As also explained by Ms Joan Hughes, Chief Executive Officer of Carers
Australia:
Carers keep saying, ‘Why don’t people value and acknowledge
what we do?’ We believe that you can do that within legislation, but you also
have to have a strategy; you have to be able to monitor whether that is having
an impact on carers’ lives.[57]
Elements of National Carer Legislation and Policy
3.54
In considering the potential elements of national carer legislation and
policy, evidence to the Inquiry has suggested the following components:
n increased recognition
of carers by:
§
the wider community to support an enhanced awareness of the challenges
carers face and the needs of carers[58];
§
governments to promote carer involvement through consultation and
ongoing engagement in the development of carer legislation, policy and service
planning[59]; and
§
professionals working in the health system and community care
system to acknowledge the involvement of carers as partners in care.[60]
n the right of carers
to receive an assessment of their health and welfare needs, their information
and skills development needs, and their needs for supports and services to
assist them in their role;
n access to supports
and services to assist carers to provide sustainable care and/or which allow the
carer to access life choices beyond their caring role; and
n support for carer
participation in education and/or employment, including carer rights in the
workplace.[61]
3.55
Advocates for national carer legislation and policy also argue that it
should acknowledge the diverse needs of different carer populations, including young
carers, CALD carers and Indigenous carers.[62]
3.56
The importance of including processes for assessing the impact of a national
care legislation and policy, for monitoring compliance and providing a
mechanism for carers to raise grievances or complaints has also been
emphasised.[63] With regard to
establishing a suitable grievance process, Carers Australia suggest that the
following models are worthy of consideration:
n a dedicated
Commissioner within the Human Rights and Equal Opportunity Commission;
n an independent Carer
Commissioner established under specific carer legislation, along the line of
Children’s Commissioners at the state level; or
n a Carer Ombudsman
position within the Commonwealth Ombudsman’s Office.[64]
3.57
Several submissions have also noted the importance of providing adequate
funding and resources to support the implementation and effective operation of a
national carer legislative and policy framework.[65]
In relation to this, Ms Annemarie Ashton of Carers ACT stated:
It is very important that the [national carer recognition] charter
also has provision to resource an education program. Having the best charter in
the world is not any good if nobody in public or in government knows it is
there, how to use it and what it means. We would like an obligation that all
carers are informed of their rights and responsibilities under any such charter
and that service providers have that information as well so they fully
understand rights and responsibilities of carers and also of the health
profession.
We would like to see an element of compliance in the charter.
If you do not actually put a compliance mechanism within the charter,
government departments and agencies will not address and achieve that systemic
reform.
The establishment of an appropriate federal body is essential
to review the implementation of such a charter, to receive and review reporting
on compliance, to receive complaints from carers on non-compliance and to have
sufficient power to take proper action to redress evident non-compliance.[66]
Support for National Carer Legislation and Policy
3.58
The Committee acknowledges the weight of evidence urging an improvement
in carer recognition and carer rights through specific carer recognition
legislation and associated policy. While recognising that most states and
territories already have carer recognition legislation and/or carer strategies
or action plans, the Committee believes that a national approach to establish consistent
and minimum acceptable standards is justified. Therefore, the Committee
supports the introduction of overarching national carer legislation to
complement existing state and territory legislation.
3.59
The Committee also believes that national carer legislation will need to
be complemented by national carer policy which details precisely how and when
governments will meet their commitments to carers. Although the Committee
sought advice from several sources on the essential elements for inclusion in a
national carer recognition framework, it is clear that further detailed consideration
and consultation with key groups, including with carers themselves, is
required. Importantly, national carer policy, as with national carer
legislation, will need to build on and complement existing state and territory
frameworks.
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. |
3.61
Importantly, once established the effective implementation and operation
of a national carer recognition framework will require adequate resourcing to
support an education program to inform carers, governments, community care
service providers, health professionals and others of their rights and
responsibilities under the framework. The framework will also need to possess
mechanisms for monitoring compliance, for assessing outcomes for carers and for
addressing any grievances that may arise.
A National Coordination Mechanism or Office for Carers
3.62
In addition to calls for the introduction of a national carer
recognition framework, submissions from some carers and organisations have
identified the need for a mechanism or entity to oversee the development of
carer legislation, policy, programs and services that are nationally
coordinated, effectively linked across all tiers of government and across
portfolios. To achieve coordination across the various tiers of government,
Carers SA proposed:
That strategic partnerships be developed between national and
state jurisdictions similar to the Commonwealth State and Territories
Disability/Council of Australian Governments Agreements be explored as avenues
for a national/state strategic nexus for carer support.[67]
3.63
Based on her own experiences of providing care both for her elderly
father and for her son with profound and severe disabilities, Ms Helen Johnson highlighted apparent inequities in the
levels of support available to the frail aged and their carers in comparison to
younger people with disabilities and their carers, noting:
... there is so much more funding available to those who are
ageing and support for their Carers in comparison to parents and/or Carers who
are caring for children and young adults with a disability for a greater length
of time.[68]
3.64
To address this inequity Ms Johnson proposed that responsibility for the
provision of supports and services for the frail aged, for people with
disabilities and for their carers could be assumed by a single Australian
Government portfolio, suggesting:
Perhaps the whole portfolio needs to be called 'Health,
Ageing, Disability and Carers (HADC) portfolio. This will bring responsibility
at a Commonwealth level and hopefully a positive outcome for some of the most
vulnerable members of the Australian community.[69]
3.65
Ms Mary Walsh, who has also provided long term care for more than one
care receiver with differing care needs, highlighted the inefficiencies for the
Australian Government and for carers arising as a consequence of separated portfolio
responsibilities, explaining:
... having Health and Ageing (Aged care and HACC) in one
department, and Disability (FaHCSIA) in a separate department are internal
barriers which create inefficiencies for Government and additional barriers for
carers irrespective of the type of carer. Many carers of people with lifetime
disability are now also carers for their ageing parents, so they have to deal
with two separate departments - as well as Centrelink and the medical
fraternity.[70]
3.66
To effectively administer and coordinate carer legislation, policy,
programs and services, some submissions have suggested that there is a need for
the establishment of a single national government entity.[71]
For example, Palliative Care Australia (PCA) explained:
To date there has been little coordination of service funding
and service provision across federal, state and local government areas and
limited co-ordination between voluntary agencies, leading to unequal social and
geographical distribution of services. PCA believes a key contribution of an
'Office for Carers' could be to support better outcomes through greater
coordination.[72]
3.67
Advocating for the establishment of a ‘National Office for Carers’,
Carers Australia observed:
Carer issues and policies sit across many government
portfolios. There is currently no framework to assist departments achieve
coherence across policy and program initiatives. Also there is no vehicle for
coordinating a broad national carer strategy or action plan. This is a
perpetual challenge for governments.[73]
3.68
Carers Australia proceeded to make the following suggestions in relation
to a possible location for a National Office for Carers:
The optimal location of this office is with the Department of
Prime Minister and Cabinet in line with its strategic influence and
coordinating role across government.
The Federal Government has established an Office of Work and
Family and one option is that the Office for Carers be located within this
structure. However the Government is also in the process of developing its
social inclusion agenda and strategy and it may be that a future Social
Inclusion Unit is established. This may be an alternative structure within
which an Office for Carers could be situated.[74]
Support for Increased Coordination
3.69
Given the need to achieve a national framework of carer legislation and
policy that is effectively linked across all levels of government and portfolio,
the Committee agrees that there is a need to establish a coordinating mechanism
or entity. Rather than seeking to establish a new entity, the Committee considers
that there is merit in the suggestion to embed the functions of a national office
for carers in an existing Australian Government department.
3.70
Given its role in coordinating the administration of legislation and
policy across Australian Government departments and in supporting
intergovernmental relations with state and territory governments, the
Department of Prime Minister and Cabinet (PM&C) might be an appropriate
location for a national office for carers.[75] It is unclear however, whether
the role of an office for carers could be assumed by the Office of Work and
Family that already exists within PM&C, or whether a new office will need
to be established within this Department to support the role.
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.
|
3.72
Specifically with regard to the coordination and streamlining of policy,
programs and services provided by the Australian Government, the joint submission
from the Australian Government departments (FaHCSIA, DoHA & DVA) themselves recognise problems for carers and care receivers arising as a consequence of the involvement
of different portfolios in providing programs and services, stating:
The Australian Government recognises the difficulties [the
involvement of various portfolios and levels of government] poses for carers
and their families and the complexities they face in navigating the service
delivery system.[76]
3.73
Although the joint submission from the Australian Government departments
(FaHCSIA, DoHA & DVA) proceeds to indicate that the various Australian
Government departments with portfolio responsibility for carers and for care
receivers are working together on options for structural reform to simplify and
streamline programs and services, the Committee understands that this is likely
to be a challenging and time consuming process. An alternative approach to
achieving greater coordination and streamlining of carer policy and programs at
the level of the Australian Government would be for a single Australian
Government department to assume portfolio responsibility for people with
disabilities, people with mental illness, the frail aged and their carers.
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.
|