Chapter 4 Information, Skills and Capacity Building
4.1
This chapter looks at the increasing demands placed on carers to provide
quality care in diverse caring situations, and the breadth of knowledge and diversity
skills required to fulfil the caring role. The chapter will examine carers’
needs for:
n information;
n peer support networks;
n training and skills
development;
n coordination of
services or case management; and
n advocacy support, both
for themselves and on behalf of the care receiver.
4.2
The chapter also looks at the need to increase recognition of carers by health
professionals and community service providers as partners in the care team. The
final section briefly explores existing legal mechanisms relating to substitute
decision making.
Diversity of Information Needs
4.3
Changes in health, mental health, disability and age care policies have
supported shifts from institutional care to care at home. Carers are
increasingly required to manage complex health and care needs of people with serious
medical conditions, disability, mental illness and terminal illness. Current
policies rely not only on the availability and willingness of people to provide
care, but also on their ability, their competence and capacity to provide care.
4.4
However, as the Ethnic Disability Advocacy Centre explained:
... family carers generally find themselves taking on this
role 24/7 with little preparation, knowledge or support for the task at hand.
They are expected to do it with professionalism and frequently need to juggle
the numerous other roles within their usual daily routine. Family carers take
on many of the skills of 'professional' roles such as health care nursing, life
coaches/counsellors and educators, social facilitators, negotiators and
advocates, care managers, futures planners, etc.[1]
4.5
Many carers reported feeling ill-equipped to carry out the many facets
of the caring role. Throughout the evidence, carers and organisations have
pointed out the need for carers to be given increased access to relevant
information, education, training, family and carer advocacy, case management and
care coordination services. Many are, in fact, calling on public policy makers,
healthcare professionals and community care service providers to recognise
carers as members of the care team providing a service to meet the needs of the
care receiver.
4.6
Understandably, the information carers find useful will vary according
to their situation. Ms Lee-Ann Heron, from the organisation Special Kidz
Special Needs, described some of the questions she was concerned about at the
commencement of her caring role:
When I first found out my daughter has special needs I had so
many questions, like: What services and supports are available? Where do I find
information on her condition? What are her therapy options? What are her
equipment options? What are our childcare & respite options? What are her
education options? What are my career options? ... It took a long time to find
the answers to these questions ... time that is precious to carers like me. [2]
4.7
On the other hand, for many carers, including older carers considering
their own future and that of the care receiver, information on legal and financial
issues, alternative accommodation and care options may be a priority.[3]
As Ms Dulcie Sullivan explained:
I have cared for Paul for his entire life ... In 2007 due to
my increasing age I applied to VCAT [Victorian Civil and Administrative
Tribunal] to appoint a Public Trustee to manage his financial affairs … I also
applied to VCAT to appoint a Public Advocate for guardianship of his medical,
dental and housing requirements … The E. W. Tipping foundation have been
assisting with some ‘Home skills Training’ for when Paul finally goes to live
without me. This transitional period is not easy for me due to lack of
knowledge of choices available.[4]
4.8
The information needs of carers are as diverse as their care situations.
However, evidence has suggested that there are common subject areas that carers
want information about. These include information on:
n the care receiver’s
medical condition or disability, and options for treatment, therapy, aids and
equipment;
n the practical aspects
of providing care, including nursing care, personal care and behavioural
management;
n services and
supports;
n self care; and
n legal and financial
issues, including guardianship and substitute decision making, mental health
legislation, social security, financial and future planning.
Barriers to Information Access
4.9
As noted previously, health and community care service systems are
complex and fragmented. Currently there is no single access point for carers to
seek information. Carers WA presented the following picture:
There remains a multiplicity of agencies and services that
provide information which can present a confusing, off-putting and impenetrable
process for carers.[5]
4.10
The impact on carers is explained by the Yarrawonga Mulwala Carers
Support Group:
Many carers report difficulty accessing appropriate
information throughout their caring life. There is a broad range of information
available for carers however dissemination of this information is very
fragmented - often what carers find out depends on which agency they have been
referred to. Many carers report ‘stumbling on information’ which would have
been useful to them much earlier on.[6]
4.11
The result is confusion and frustration for many carers. The following
comments from carers provide examples of how carers experience barriers to
accessing information:
Mr Rolf Regal –
carer for his wife who has multiple sclerosis
Assistance for people with
disabilities and their carers is already available from many different sources,
e.g. from each of the three levels of government, as well as from charitable
organisations and other private bodies. It is delivered in a multitude of
different ways, and eligibility criteria are many and varied. Initially, when
carers first take on their caring role, after a fresh diagnosis or an accident,
most carers know nothing about any of this. One of the most frequently
expressed frustrations which carers have is, that they do not know what
assistance is available and what they may be entitled to i.e. we have a
communications problem.[7]
Mr Henry Thomas –
carer for his wife who has dementia and who is now in residential care
It was a little complex in that I
did not know where the care services were. I started ringing up the shires and
eventually got talking to the Towong shire where I actually live. They provided
HACC [Home and Community Care] services but they also told me that I should get
an ACAT [Aged Care Assessment Team] assessment, which I did. That then put me
into a package which was taken over by an agency in Wodonga. So I was never
really able to get a grasp on where funding was coming from between the various
agencies, and because I was then on a package which the agency in Wodonga was
looking after, they were talking to the Towong shire and then to me. So I was
never properly in the loop. Initially, even before I had the ACAT assessment, things were being done, services were being provided, but when I asked, ‘Who is
paying for this? Where is the money coming for this and that?’ I was told,
‘Well, there are various buckets of money,’ and that is as far as it really
got. So I did not understand what the system was and, over the four to six
years, I only started to find out more through groups ... where I could speak
to other carers, find out what they had been given in services and then compare
my situation with theirs.[8]
Name Withheld – an employed
carer who has been caring for her elderly mother for 20 years
Difficult and time consuming to
obtain the information as service providers are not forthcoming with such
information until they have secured a package ...
I have found it extremely
difficult and time consuming to obtain information on care and what is
available. I appreciate that there are associations like Carers Queensland who
handle respite and they have been helpful but the situation became difficult
when I then tried to put their information into practice. I started to hit
brick walls especially as far as respite and in home care were concerned.[9]
4.12
The evidence suggests that carers expend energy, time and resources
which they often do not have, exploring various options to find information and
services that they require for themselves or for the care receiver. Carers
report that they feel that the onus is on them to ask the right questions to
the right agency to elicit relevant information. As one carer explained:
It is also very difficult to access information - you ring
one Department and get passed to another Department or get told it is State or
Federal or vice versa. In the end, you give up trying because, as a carer, you
just don't have time to keep following things up or to do the amount of
paperwork involved.[10]
4.13
The barriers to accessing information for carers from culturally and
linguistically diverse (CALD) backgrounds are even greater. Ms Au Yeong, a carer in Perth, pointed out several of the significant barriers confronting
carers from CALD backgrounds and certain strategies which, in her view, could help overcome certain
barriers:
[Migrant carers] do not know they have rights or they think:
‘As a migrant I shouldn’t be saying that I want this and that, because I need
it. I’ll be grateful for what I receive and therefore I do not ask for help.’
Secondly, they do not know what help to ask for. The system is a nightmare. It
is so complex for people who have good English comprehension. A migrant or a
refugee recently arrived would not know how to navigate the system or what to
ask for. So that empowerment and that self-advocacy is one issue. Also, you
need to look at providing sufficient interpreting and translation. The
mainstream services should be aware and take note of where to disseminate that
information and whether it needs to be translated into different languages ... Perhaps
through the ethnic communities themselves—through ethnic radio perhaps. There
are a couple of avenues that mainstream services need to look at in getting the
information out.[11]
4.14
Although the vast majority of carers have contact with health services,
evidence indicates that many are not provided with basic information on
services and supports. One such carer, Ms J Burke, commented:
I care for my husband with an ABI [Acquired Brain Injury] and
I have breast cancer. I wasn’t aware of 63 days respite for carers until 3
years into my husband’s stroke. Why don’t medical facilities, medical personnel
tell you about these things from the start?[12]
4.15
For some carers the need for information is urgent and critical. In its
submission, the National Network of Adolescent and Adult Children who have a
Mentally Ill Parent (NNAAMI) quoted one of the organisation’s members as saying:
‘I was on the verge of attempting suicide, giving up, packing
it all in, finishing it all, no more, had it all planned out, until I saw the
NNAAMI [web]site by accident. I now know I’m not alone. I cried and cried! The
whole time reading those stories, not much different to my own’[13]
4.16
A number of submissions commented on the lack of availability of
information about financial assistance available to carers through Centrelink. One
such submission, provided by Mr Peter Casey, observed:
... one member of our circle had absolutely no idea that
there was such a thing as a carers allowance or payment available from
Centrelink. This poor woman had been performing the task of carer alone and
unassisted for years and my heart really went out to her. Being the sceptic
that I am I can see how such a situation might come about because Centrelink is
remarkably reticent in advertising allowances and other facilities available to
carers and they should bear at least some of the blame for such a regrettable
oversight.[14]
4.17
Another submission, from Huntington’s Victoria, highlighted difficulties
with Centrelink services, which some carers experience:
There are many issues with incorrect information being given
from Centrelink staff to clients, in addition to extremely distressing
incidents of poor service provision. The one issue that makes our clients cry
is when they talk about Centrelink.[15]
4.18
The Commonwealth Ombudsman also raised concerns about the difficulties
carers face accessing and understanding information about social security entitlements:
Our experience has been that complainants are not aware of
the difference between carer payment and carer allowance. Nor are they aware of
other supplementary payments such as mobility allowance and pensioner education
supplement that might be payable to the person who was receiving the care (the
care receiver).
In most cases that we investigate, particularly those where
the level of care required is high, the carer has taken on responsibility for
managing the financial, as well as physical needs of the care receiver. They do
not have time to research what payments or services might be available for
them, whether online, or by phone enquiries or visits to Centrelink.[16]
4.19
Centrelink uses a ‘life events’ model which aims to match customers or
potential customers with all the correct payments and services applicable to
their situation or combination of circumstances.[17]
However, the Ombudsman’s investigations have shown that, in practice, the life
events model used by Centrelink does not always ensure that customers are
advised of the full range of services which their situation entitles them to.[18]
4.20
The evidence clearly suggests that carers want clear, accessible and
relevant information on financial and non-financial services and supports which
are available. As one carer summed up:
... it is essential that all carers, and in particular new
carers, are aware of what help is available. That help, even now, is
considerable but many people flounder around, unaware of what is available.
This may be the fault of the medicos who make the diagnoses not being au
fait with the system - but I believe that it is at that point that the
carer should be allocated a case manager, introduced to Carers Australia and
any other source of information necessary to their efficient functioning as a
carer. This could save a lot of heartache.[19]
National Networks Providing Information
4.21
There are three key national networks which can provide carers with
information and support:
n Commonwealth Respite
and Carelink Centres;
n Carers Australia and the state and territory network of Carer Associations; and
n Centrelink.
4.22
There is a national network of 54 Commonwealth Respite and Carelink
Centres across the country. The joint submission from the Australian Government
departments (Department of Families, Housing, Community Services and Indigenous
Affairs (FaHCSIA), Department of Health and Ageing (DoHA) and Department of
Veterans’ Affairs (DVA)) explained that the Centres:
n provide information for
carers, the aged and other members of the community seeking free and
confidential advice on community care, aged, disability and other support
services available in local regions;
n provide information
about costs for services, assessment processes and eligibility criteria and
maintain an extensive database of services; and
n network with Aged Care Assessment Teams (ACATs), general practitioners, allied health providers and community
organisations.[20]
4.23
Nevertheless, a number of carers and organisations have been critical of
the Commonwealth Respite and Carelink Centres’ capacity to meet the needs of
carers. For example, Carers WA suggested that the Centres cannot adequately
address the information needs of carers because they have to provide services
to a wide range of clients.[21] The issue of Commonwealth
Respite and Carelink Centres having insufficient local knowledge has also been
raised:
Setting up services that cover such a large geographic area [that]
they have no ‘real’ knowledge of the area is counter productive [and] causes a
high level of frustration with other services and client's. In Macarthur, the
Commonwealth Information service that is meant to cover our area is not based
locally. A local provider reported one of their clients had said ‘oh I rang
them, first I had to spell the name of the town I lived in, then they just read
me stuff off a database’. That same person through a local service provider was
referred to another agency, informed of a local unfunded support group that had
commenced recently and was invited to attend a consultation regarding their
needs.[22]
4.24
Others are more complimentary. One carer described the service as:
... a wonderful and crucial service to families/carers with
children/adults with highly specialised care needs.[23]
4.25
The information services provided by the Commonwealth Respite and
Carelink Centres are bolstered by information services provided by Carers
Australia and the national network of state and territory Carers Associations.
The Carers Associations are funded through several Australian Government
programs[24] to deliver a range of
information products, specialist information and advice services to carers,
including young carers, and to service providers.[25]
4.26
In the view of Carers Australia, the two national networks comprising Carer
Respite and Carelink Centres and the Carers Associations, provide a sound national
structure for the provision of information and support to carers.[26]
4.27
Centrelink is also a national network which provides information and
advice on social security and financial issues for, among many other client
groups, carers and care receivers. For some, Centrelink is ideally placed to
disseminate broader information to carers.[27] Ms Susan Pringle from the
Cooinda Family Support Group, commented:
Information provision is random and may be around at a time
when it has little significance and so is overlooked when required. Centrelink
is the ideal avenue of forwarding relevant information to carers on a regular
basis.[28]
4.28
The three national networks all provide advice to carers and/or care
receivers, but each has a slightly different focus. In addition, there are also
state and territory and local government agencies, not-for-profit and
for-profit organisations delivering health and community care services and
supports to carers and care receivers, including information services of
different kinds. What many carers have called for is a ‘one-stop-shop’ or
‘single access point’ to bring together advice on all the services available
for carers and care receivers.[29]
A Single Access Point for Carers
4.29
A typical example of the calls for a one-stop-shop was made by Ms Colleen Atkinson who commented:
... within my home file I have information on the following
agencies - Commonwealth Carers Respite Centres; Commonwealth Carelink Centres;
Carers SA; Carer Support & Respite Centre Inc; Commonwealth Carer Resource
Centre; HACC; local government; plus a number of NGO's offering respite. Where
do I start? ... Consider a review of the above-mentioned agencies (vis-a-vis
respite), and establishment of a ‘one-stop shop’ central agency which can
provide straight forward but comprehensive information about services to carers
- and which is widely advertised so it is easy for carers to access. [30]
4.30
The case for a one-stop-shop to respond to carers’ information needs was
also argued by Carers WA in the following terms:
The need for information can be best met in the form of a one
stop shop dedicated to carers in which the multiplicity of service providers,
health professionals and others can be linked. In addition many carers do not
respond well to call centres and phone services only and would prefer a person
centred face to face model of service delivery. The location of information
centres for carers has to be addressed as it is not meeting carer's needs. The
information needs of carers would be best met in a variety of central settings
such as information centre for family carers in every teaching hospital, local
community centre and Centrelink offices.[31]
4.31
DoHA and state and territory governments are currently piloting Access
Point Demonstration Projects in at least 11 locations across the country.[32]
The Access Points are designed to provide one-stop-shops to make access to
community care services easier for carers and care receivers by:
n providing information
about community care services;
n providing advice on
eligibility for services;
n conducting a broad
assessment of needs, including the carer needs; and
n facilitating
referrals to community care service providers or for a more comprehensive
assessment.[33]
4.32
Each Access Point Demonstration Project will operate for about 12 months
and be evaluated at three levels: project, jurisdictional and national. The
evaluations will inform decisions about potential broader rollout of Access
Points in the future.[34]
4.33
The Committee considers that the Access Point Demonstration Projects
have merit as they are an attempt to make access to community care easier by bringing
together Australian Government, and state and territory services in a
consistent way. However, for Access Points to fully meet the needs of carers
for a one-stop-shop, they will need to have the capacity to assist all carers
in diverse caring situations. This will require Access Points to provide carers
with information and advice, assessment and referral to services across the
fragmented community care system. This includes aged care services, disability
services and community mental health services as required by the carer and care
receiver.
4.34
It is unclear what linkages, if any, will exist between the assessment
and referrals provided through Access Points with other programs delivered by
state and territory governments, for example the Aged Care Assessment Program
and disability programs.[35] Even if the single
access model is deemed a success, it is also not clear whether Access Points
would replace or complement the Commonwealth Respite and Carelink Centres. The
risk is that yet another layer of program orientated and ultimately narrowly
focussed reform will perversely lead to more complexity and confusion for
carers rather than less.
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. |
4.36
The reality is that it may never be practical to have a genuine one-stop-shop
to help carers and care recipients given the range of their needs and because
they are also likely to need to use Centrelink for financial services. In that
case and certainly in the short term, there appears scope to improve the links
between the existing networks (as well as with state and territory information services).
Without wishing to make a specific recommendation, the Committee encourages the
Health, Community and Disability Services Ministerial Council to improve the
coordination between agencies so that they can provide seamless and consistent
advice across programs and jurisdictions to carers and care receivers.
Peer Support Groups
4.37
Carers and organisations consistently reported that peer support groups
and networks are an extremely valuable source of information and empowerment
for carers.[36] Peer support groups for
carers function in different locations across Australia providing carers with
information, advice, support and social opportunities as well as providing a
means for advocating for supports and services. Many of these groups are unfunded
and are not legal entities in their own right. Other support groups, such as Cooinda Family Support Group based in Albury/Wodonga, have evolved into incorporated bodies funded
by government to provide support services to carers and care receivers.[37]
4.38
Some peer support groups are affiliated and supported by state and
territory Carers Associations. For example, Carers Queensland provides support
to over 100 carer groups throughout the state which provide opportunities for
carers to meet and share experiences on a regular basis.[38]
Other support groups have been established under the auspices of particular programs.
For example, the Dementia Respite Options program in Albury NSW provides
dementia specific services including carer support groups to people in the
region.[39]
4.39
Another support group from Albury NSW, Daughters in Demand, was formed
over ten years ago by a group of nurses caring for elderly parents who wanted
emotional and other support to balance the demands in their lives.[40]
This and many similar groups exist through the generosity of carers and former
carers who come together to support each other, share experiences and knowledge
and volunteer their time, a resource which is often extremely limited.[41]
4.40
Some unfunded carer support groups, such as the Kiewa Valley Carer
Support Group in Victoria, have concerns about their sustainability and capacity
to meet the needs of local carers.[42] Occasionally, there
appears to be some limited possibilities for funding from state and territory
governments. As indicated by the Myrtleford Carer Support Group:
Just recently, we applied to DHS [Victorian Department of
Human Services] for some non-recurrent funding around running some activity
days to better support carers. We ran a music therapy day one month, and then
last week we ran a Humour in Caring day. [43]
4.41
Many carers believe that the support offered by a peer support network
is extremely beneficial. One such carer, Ms Michiko Parnell, explained how
beneficial she believed peer support would have been to her and her husband at
the time of their child’s diagnosis:
We were told of our child's diagnosis and left the
paediatrician's office to face the unknown and the grief on our own. It would
have been very helpful for the paediatrician to give us a number to call, that we could get a home visit or just have another
parent WHO HAS BEEN THROUGH THIS, to act as a bit of a 'peer support' role.
Even a national support line (like Lifeline) so that I could talk to someone
who has lived the experience, would have been enormously helpful. Looking back,
five years later, what would have helped my mental health more than anything is
the HOPE that we would enjoy our lives after the catastrophe of the diagnosis
and in spite of the workload of the care and barriers we face in everyday life.[44]
4.42
As another carer explained in her submission:
... I am on antidepressants and need to talk to others on how
they cope and get advice [on] how they cope ... Getting advice and help [on]
how to handle certain situations like alcohol abuse, money issues and general
advice ... Providing more information on what help is available.[45]
4.43
Given the importance to carers of peer support, many carers and
organisations have recommended the expansion of informal peer support networks.
One such recommendation was made by ANGLICARE Sydney:
Carer Peer Support programs be funded to encourage
networking, social interaction and further support for advocacy. Carer Support
programs also need to run in the evenings and weekends to ensure that working
carers can access them.[46]
4.44
The valuable contribution made by the non-government and voluntary
sectors using peer support, self help and consumer or group advocacy models was
also commented on by the Royal Australian and New Zealand College of
Psychiatrists in respect of people with mental illness and their carers.[47]
The College recommended:
... more support should be given to the development and
expansion of non government organisations to assist carers access meaningful
supports, and promote self help and consumer advocacy ...[48]
4.45
There is no doubt of the value of peer support groups for providing
carers with information, support, social contact and, at times, advocacy. The
Committee believes that there is further potential for government to encourage
the development and geographical coverage of such groups. One way this could be
accomplished is through the provision of small grants to assist groups with
expenses. Access to small grants programs for carer peer support groups would
need to take into account that some groups will not be incorporated bodies nor
be affiliated with an incorporated body such as a Carer Association.
Recommendation 8 |
|
That the Australian Government make locally based peer
support carer groups a priority within existing community grants programs
available across portfolios. |
4.47
In addition to the informal peer support groups considered above, there
is a national network of peer support groups for carers of young children (i.e.
under school age) with a disability. This is funded by the FaHCSIA. The MyTime
Peer Support Groups give carers the chance to socialise and share ideas with
others who understand the rewards and challenges of the caring role. The groups
also provide an opportunity for carers to access information about available
community support services and parenting information. The MyTime Peer Support
Program commenced in February 2007 and has established 175 peer support groups.[49]
4.48
The submission from Uniting Care Remote Family Services in Bairnsdale, Victoria, endorsed the support offered to parents of young children through
the MyTime Peer Support Groups. The submission strongly advocates for the
expansion of the Program in terms of its coverage of regional and remote areas
as well as the level of assistance provided to individual MyTime Peer Support
Groups:
Our group commenced in February this year and we have found
MyTime funding hopelessly inadequate and are desperately looking for more
funding so as to more adequately support these families.[50]
4.49
The Committee sees the value of a national network of MyTime Peer
Support Groups to provide support to parents caring for young children with
disability. The Committee notes that FaHCSIA is trialling a small number of
MyTime Peer Support Groups for parents of school age children with disability.
Assuming this proves successful, the Committee supports an expansion of the
Program to include this group of carers and their children. In addition, the
Committee believes the benefits of the Program for carers warrants further
expansion to increase geographical coverage, particularly in regional and
remote locations.
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. |
Skills Development and Capacity Building
4.51
As previously mentioned, the heath and community care service systems rely
heavily on carers continuing to provide care in their own homes for care receivers
and increasingly, to care for those with high support needs who have been
discharged from formal health services into community settings.[51]
As stated simply by one carer:
Carers ... relieve the stretched resources of hospitals, aged
care facilities by keeping their caree at home.[52]
4.52
As a result, Carers WA explained:
... [carers] are significantly involved in the clinical
processes including recovery and rehabilitation as well as the ongoing care of
people with long term and, in some cases terminal, health issues.[53]
4.53
However, the majority of carers commence their caring role with little
or no warning, as Carers Australia reported:
Carers can come into their caring responsibilities at any stage
throughout their life. This could be with the birth of a child with a
disability, an accident, the onset of mental illness, the diagnosis of a
terminal illness or with an ageing parent becoming frail.[54]
4.54
It is clear from the evidence that many carers over time develop a high
level of skill in a wide range of areas. A carer who has cared for her husband
who has a degenerative neurological condition commented:
Over the past 29 years I have become my husband's
physiotherapist as necessary to keep his muscles from total atrophy, podiatrist
and manicurist as due to poor balance he cannot manage such tasks, his wound
nurse, as wheelchair living is an occupational hazard for tissue tearing;
pressure care specialist, as the body loses muscle the pressure areas on the
bottom and the feet become susceptible to pressure sores; case manager for
keeping track of care workers who come to the home to carry out personal care
routines and this means filling in when they don't arrive, educating ... on the
new or re instituted treatments; negotiator for access to care or respite care.
Overnight care includes re positioning due to pain in my husband's legs,
assisting with bladder/bowel functions as necessary ...
I act therefore as a para-professional, with a wider range of
skills than they, as I have to act in such a wide variety of roles whereas
their skills are compartmentalised.[55]
4.55
However, understandably, at the outset of caring most carers are
unprepared for the role. As Carers WA observed:
Most carers are not trained in basic nursing care when taking
the care recipient home ... and basic training is required in order to support
carers adequately and therefore provide the care recipient with the best
quality of life possible[56]
4.56
The comments from the state and territory Carer Associations are
supported by many individual carers who reported that at the
commencement of their caring role they
felt ill equipped and believed they lacked the skills, knowledge or capacity to
cope effectively with the practical and emotional aspects of providing care. Some
typical comments from carers are presented below:
Ms Judith Small –
an employed carer who cares for her husband
My role as a carer commenced in
December 1993 when my husband, Bob, was diagnosed with a very large Brain
Tumour and subsequently had surgery for its removal. These events left him
paralysed from the waist down and unable to speak. He was hospitalised for 2
months after which he was discharged into my care, on the grounds that medical
staff felt Bob was making better progress when I took him home on weekends.
There was no consideration as to my capacity to cope.[57]
Ms Claire Hill – carer
for her 95 year old father
I struggle with my father’s care -
I am not a nurse and often find it hard to know how to proceed with things like,
for example, wound care.[58]
Ms Julie Witts –
carer for her daughter
I don’t have any formal training
and feel there is less importance put on my role than that of paid carers who
assist my daughter ... As a carer, I need help with training to deal with the
specific needs of the person I care for.[59]
Perth Carers Forum Group – a
group of 42 carers from diverse caring situations
... carers reported that they
could be providing significant care in the line of nursing care, with very
little training or skills. It is just assumed that they would have to somehow
learn and undertake complex care tasks. Carers felt that the burden and strain
placed on them needed to be recognised and that relevant, trained support
should be provided to ensure that they are skilled and prepared for their
caring role from the outset.[60]
4.57
Many carers are asking governments to provide formal training to equip
them for the caring role.[61] There are some
opportunities available across the community care system to receive skills
development in relation to the caring role. For example, Alzheimer’s Australia described its role in providing training for carers under the Dementia Caring
Project which was funded in 2006 by the DoHA:
Alzheimer’s Australia partnered with 52 Commonwealth Carer
Respite Centres who contacted carers and families of persons with dementia to
develop a menu of skills enhancement activities that consumers desired. The
project enabled over 900 individuals to take part in various learning and
skills enhancement sessions.[62]
4.58
Alzheimer’s Australia reported that there was a positive uptake of the
training by carers, with the following skill areas being the most sought after:
n Accessing legal information;
n Understanding
dementia;
n Advocacy;
n Self care strategies;
n Managing behaviours
of concern;
n Continence
management;
n Health and well
being;
n Communication;
n Accessing information
to support decision making, for example, information on residential care,
Centrelink, and support services;
n Home maintenance;
n Personal care;
n Role reversal related
practical tasks such as car maintenance and cooking; and
n Use of computers and
the internet including internet banking, online shopping and e-mail.[63]
4.59
However, it appears that formal training available to carers is largely ad
hoc and often limited in scope and duration.[64]
In response, carers and organisations have recommended the expansion of training
opportunities for carers to support them in their caring roles.[65]
Carers SA summed up the training and skill development needs of carers as
follows:
Training is required across a range of topics such as the
carer's roles and responsibilities; disabilities and illnesses; manual
handling; carer personal care and health and well being; communication and
relationships; negotiation and advocacy, including making complaints; the
health and community services system ... and managing the relationship with
paid care support workers.[66]
4.60
The training requirements of carers will vary to some degree according
their stage of life and the needs of the care receiver. For some carers the dominant
need may be for skills in relation to accessing and understanding information
on legal and financial issues, for other carers acquiring skills to manage
complex care needs may be required, while for others developing skills in
relation to safety issues and managing concerning behaviour is of the utmost
importance.[67] A parent of three
children, two of whom have an autism spectrum disorder, explained she urgently
required skills to manage:
Constant behaviour issues. Constant safety issues. Constant
violence; threats; damage. I need help with teaching; safety; behaviours ... I
need someone to show me how to teach my kids. [68]
4.61
In her submission, Ms Michela Cardamone who is a carer for a family
member with a mental health condition and employed as a carer consultant,
points out that carers constantly need to advocate for themselves and the care
receiver and often don’t have the skills to negotiate with mental health
professionals. She commented that there was a need for carers to have:
Education about the privacy act, and how this impacts on
caring for a person with mental illness. How to negotiate with clinicians
around issues concerning confidentiality. It is important for family members to
be able to get information about what is happening to their loved ones. This is
particularly the case when it is clear that after treatment most mentally ill
people will be returned to their families.[69]
4.62
The Committee accepts that the training and skills development needs of
carers are currently not being fully met. The challenge, however, is to provide
appropriate and accessible training that reflects the diverse situations of
carers. In these circumstances training should not be developed in an ad hoc
manner and the Committee sees benefit in a national training and skills
development strategy for carers. This may very well be built on existing educational
and training programs.
4.63
The Committee also suggests that such a training strategy for carers examines
the use of flexible approaches and delivery mechanisms, including use of e-learning
and video conference media.[70]
4.64
The Committee has targeted its recommendation below to the Ministers for
Families, Housing, Community Services and Indigenous Affairs and Health and
Ageing and the states and territories through the Health, Community and
Disability Services Ministerial Council. However, the Committee would expect
the Department of Education, Employment and Workplace Relations and its state
equivalents, at least, to be involved in planning and implementing a national
training and skills strategy for carers.
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. |
Coordination and Representation
Case Management/Care Coordination/Carer Support Planning
4.66
Carers often seek the support of a case manager or coordinator to advise
them and help them access services for themselves and for the care receiver. Most
carers welcome these services but argue that they are inadequate.
4.67
There are a number of Australian Government, state and territory funded
case management, care coordination or carer support planning programs to help carers
to find and arrange services for care receivers. At the Australian Government
level, the National Respite for Carers Program, Australian Government Aged Care
Packages[71] and Home and Community
Care (HACC) all provide some level of care coordination and/or case management
services to carers and care receivers.[72]
4.68
Under the first of these, the National Respite for Carers Program, the Carer
Associations in each state and territory provide specialised advice, support
and referrals including ‘guided referrals’ to carers. A guided referral is
generally a one-off process, provided when a carer is assessed as lacking the
skill, time and capacity to access services which are urgently required, for
example a counselling service.[73] Also, under the National
Respite for Carers Program, Commonwealth Respite and Carelink Centres offer
information, service coordination, carer support planning and referral.[74]
However:
... there is a clear distinction between ‘coordination’ and
‘case management’. For the [Commonwealth Respite and Carelink] Centres to become
involved in ‘case management’ would require substantial additional funding as
it is a resource intensive activity.[75]
4.69
As mentioned, Australian Government Aged Care Packages offer subsidised
packages of care for older, frail people with complex care needs. The packages
comprise the Community Aged Care Packages (CACP), Extended Aged Care at Home (EACH) packages and Extended Aged Care at Home Dementia Packages (EACHD). Under
these packages, approved providers may use a case management approach to
arrange and coordinate services for the care receiver. A significant number of older
frail people who receive an Australian Government Aged Care Package, are also
supported by carers. In these situations the carers may participate in the case
management offered through the package, as explained by the Australian
Government departments below:
In administering the package (and at the care recipient's
request), the approved provider is required to recognise the role of the carer
and reflect the importance of both clients and carers in the planning,
provision, and review of the package of service.[76]
4.70
Case management services for carers and care receivers are also available
through HACC for its clients. The service:
... comprises active assistance received by a HACC client
from a formally identified agency worker who coordinates the planning and
delivery of a suite of HACC services to the individual client.
In 2007-08, some 7 percent, or around 58,000, of HACC clients
received case management services through the Program.[77]
4.71
Finally, case management and coordination services are also provided
through various state and territory government disability and community services
programs. However, the complaints to the Committee about the lack of case
management and coordination services available for care receivers and their
carer, suggest that the existing services are inadequate.
Carers Want More Case Management
4.72
Both new and experienced carers report that they often require additional
assistance to navigate the service system, access information and coordinate services
for the person for whom they are caring.[78] A typical comment was
made by Ms Megan Major:
When my husband had his stroke, the hospital social worker
helped me apply for carers allowance, obtain an ‘Advice for Carers Package',
organised a ‘Post Acute Care Program’, and gave me information about ‘Home and
Community Care Services’, A month after my husband came home I was drowning in
paperwork and information and going round in circles trying to find out who
actually did what!
I got lost in '’the maze' as I tried to work out who to
contact for various types of support. I had to deal with: District Nursing
Service and Cognitive Dementia and Memory Service - West Gippsland Health Care
Group, Gippsland Regional Aged Care Assessment Service - Latrobe Community
Health Services, Carers Victoria, Baw Baw Home and Community Care, Commonwealth
Carer Respite Centre and Commonwealth Carer Resource Centre, Centrelink, plus
GPs, physician and Neurologist.
I found this very stressful. I believe if I had been able to
continue with the support of the hospital social worker and if the local
healthcare group co-ordinated the services I would not have ‘fallen in such a big
heap’.
4.73
The evidence provides many examples of challenging caring experiences
which could have been alleviated to some extent had the carer been assisted to
access and coordinate appropriate support services. Some typical comments from
carers include:
Mr Martin Hengeveld
– carer for his 60 year old partner who has Alzheimer’s disease
My biggest challenge has been, and
still is, to come to grips with who does what. There are 9 agencies who all
have a finger in the pie, of which none stand out as truly supportive. When all
this started I would have loved to have a 'case manager', who would have been
my constant source of reference throughout my caring time, some one who might
even ring up occasionally to check on how we are going.[79]
Ms Giovanna Walker – an
employed carer, caring for her elderly father
Getting access to services is a
challenge. I work full time, and between the national helpline and local
council it involved many phone calls, I didn’t know where to go. I felt
helpless, no one would take responsibility.[80]
Name withheld – carer of a
young child who was born with Trisomy 13, a condition which causes severe
developmental delay
After a year of struggling, my
daughter had been admitted into the Sunshine Hospital and whilst she was in
hospital the nurses where shocked to find out that I wasn't receiving any home
help and organised the social worker to come and see me. Consequently I
received some home help and respite and my daughter was put on waiting lists
for early intervention services, which is now receives.[81]
Ms Wilma Smulders
– a carer for two daughters who use mental health services
As soon as a family member is
thought to have a mental illness, the prospective carer should be able to
discuss the situation with a social worker (free of charge) to help the carer
start off on the path to accessing help - medical, counselling, financial. If a
caseworker were assigned from the start, the carer would be more competent and
over time require less help from government. It would prevent subsequent
problems, and facilitate people re-joining society.[82]
Mr Robert McEachern and Ms Grace
McEachern – carers for their 38 year old son who has a severe life long
disability, living in rural NSW
A support network/caseworker who
can supply information on what is of assistance eg aids, respite, financial.
At the moment there seems to be
many different organizations who have brokered for money to help…Finding these
organizations seems to be by word of mouth… For us also is the looming decision
of the day we can no longer look after our son Will we be able to obtain long
term care when we make that decision? Will that care be available locally so he
can still be a part of our lives and possibly spend day visits with us? What
will happen when we can no longer drive? Being in our local country community
will be important for our son's well being[83]
4.74
Many carers want case management/coordination services to work with them
in partnership to address whole of life planning for the care receiver. Mr Kevin Hewitt, a Victorian carer, raised these issues in the following terms:
... what I need is a good working partnership where we can
plan for the future for a better life and more productive life for my daughter.
In this process we would have planned timelines and available resources
guaranteed ... Get out of the crisis needs controlling system ... there needs
to be more face to face case management – need to develop working partnerships
with families ...[84]
4.75
Similarly, carers also seek partnerships with a range of service
providers to jointly plan for and provide the best quality of life possible for
the care receiver. As a carer, Mr Arthur Skimin, explained to the Committee in Canberra:
We are frustrated by the fact that the carer of the patient
is not recognised by the professional care providers. This is frustrating
because we feel that we are out of the loop. We are also frustrated by the case
management processes. Many carers are aged and once you are in your mid to late
70s you can drop off the twig any day. What happens to that individual then? How do they keep their quality of life and self-esteem as the years roll on?[85]
4.76
The need for more case management services is supported by organisations
and governments. ANGLICARE Sydney, which operates the Commonwealth Respite and
Carelink Centres in the Nepean and South West Sydney Regions, argued that these
could be funded to expand their services to offer case management for care
receivers and their carers.[86]
4.77
In particular, as young carers may be especially vulnerable, service
providers are calling for the need for case management support for this group.
The Queensland Government emphasised the need to help these younger people:
The key transition points and different developmental stages
experienced through adolescence would require review and adjustment of
interventions, resources and supports needed by the young carer. Consequently,
engaging in a regular process of case review and management involving care
recipient, care provider and support agencies would be required (Adequate
resourcing would need to be available to support this kind of response to young
carers).[87]
Case Management Dissipating Funds?
4.78
A number of carers and organisations note however, the costs of diverting already scarce resources to case management or brokerage. For example, the Friends of
EACH Action Group, is critical of the case management model used by Aged Care Packages
as a ‘leakage of funds’ away from direct care and respite, saying:
The Case management model ... is jammed packed with Case
management costs, administration costs and outsourcing costs. These costs
accumulate and the end result is that between 70 and 80 percent of the package
is dissipated in costs and is not utilized to purchase hours of support that is
required to assist the person being cared for and as indicated earlier the
provision of respite for the Carer. There is very little scope for the
assessment or consideration of the quality of care provided and support
provided by this model to the person being care for and for the caregiver.[88]
4.79
Ms Helen Johnson, who cares for her son who is profoundly and severely
disabled noted the reduction of funds available directly for care:
Currently the Victorian State Government is kind enough to
provide us with a 'Linkages funding Package' where after brokerage dollars (as
this package must have a case manager attached to it) we receive approximately $6.5K.[89]
4.80
Despite these concerns, the Committee believes the argument for case
management is clear. The fact that carers are concerned that funding case
management reduces the amounts left
over for care, reflects the overall lack of funding available – a matter that
will be discussed in more detail in subsequent chapters. Innovative funding
models to be discussed in chapter 6 have the flexibility to allow carers and
care receivers to choose whether or not they wish to purchase case
management/coordination services.
4.81
The Committee understands that carers require easy access to clear and
up-to-date information, but at times they also require professional assistance
to understand the options for their care receiver and help to liaise with
service providers. Carers may also require assistance to consider longer term
planning for themselves, the care receiver and other family members. Case
management may be particularly relevant for new carers and for those facing transitions
in their own lives or in the lives of those for whom they care.
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. |
Advocacy for Carers
4.83
Advocacy is about speaking out, acting or writing, with minimal conflict
of interest, on behalf of a person or a group, in order to promote their best
interests. There are a range of different approaches to advocacy described in disability
and carer literature. Broadly, however, advocacy can be described at two levels
- ‘individual’ advocacy and ‘systemic’ advocacy.
4.84
Individual advocacy focuses on achieving outcomes for individual carers
or care receivers. It can be useful to consider the following types of
individual advocacy:
n self-advocacy – when a
person raises their concerns themselves with, for example, professionals, media
and politicians;
n informal or family
advocacy – when a family member, friend or neighbour advocates on behalf of a
family member or friend; and
n formal advocacy (including
legal advocacy) – provided by a paid staff member of a service on behalf of an
individual.
4.85
Systemic advocacy on the other hand, is a form of advocacy provided by organisations
or associations representing the rights and interests of a group rather than a
particular individual. Systemic advocacy tends to focus on influencing
government policy and practices.
4.86
A number of submissions to the Inquiry have suggested empowering carers to
advocate for themselves and on behalf of those that they care for, and by
enhancing carers’ capacity to advocate systemically to ensure that carer
interests are upheld and to remove policy barriers and discriminatory
practices.
Individual Advocacy
4.87
Funding for disability advocacy is provided through the National
Disability Agreement and delivered by 63 non-government organisations across
Australia. The program is targeted at people with disability under the age of
65 years, to overcome barriers that affect their daily life and their ability
to participate fully in the community. One of the models of advocacy funded
under the National Disability Advocacy Program (NDAP) is informal or family
advocacy which supports family members to advocate with, or on behalf of, a
care receiver.[90]
4.88
Many carers have commented on the value of formal disability advocacy
services for care receivers.[91] However, it is arguable
that carers themselves, rather than formal advocacy services, provide most of
the advocacy required by care receivers.[92] Carers also report that disability
family advocacy services, designed to support them in their informal advocacy
role on behalf of a person with a disability, are often difficult to access.[93] In the view of the National Carers
Coalition, the extent of informal family advocacy provided by carers themselves
on behalf of care receivers, coupled with the apparent lack of formal family
advocacy services, should be addressed by the establishment of a new family
advocacy network for carers to be funded by the Australian Government.[94]
4.89
Many carers have identified the need for additional training to enhance
their own capacity to advocate on their own behalf and on behalf of care
receivers. The importance of building the capacity of carers for self advocacy
has been mentioned earlier in the chapter.
4.90
However, evidence suggests that there is also a pressing need for carers
to have access to formal advocacy services for carers in their own right. Carers
Queensland reported that carers currently seek advocates to work with them in
a range of situations including dealings with employers, guardianship boards
and tribunals, government agencies including Centrelink, service providers and
health funds.[95] Carers ACT provided further
examples of where carers themselves need assistance:
Carers of people with mental health issues and drug or
alcohol addiction may face an additional problem when their personal
possessions are damaged or stolen by the carer-recipient. These losses are not
covered by insurance. It is also difficult to track down where stolen items
have been sold and try to claim them back. Carers will not usually take action
that leads to criminal charges against the care-recipient. However carers do
need access to advocacy and support when dealing with such complex issues to assist
with finding ways to resolve issues without putting the carer or care
relationship at risk.[96]
4.91
Carers themselves have described distressing situations where they were
not able to achieve a positive service response or intervention through their
own efforts. Ms Carmen Polidano, a carer for her 31 year old son, described her
difficult caring situation:
My son has been physically violent and verbally abusive since
he was 14 years old. When the violence started, my daughters were very young.
As a family, we endured 15 years of domestic violence and verbal abuse. We
lived in constant fear. I lost contact with friends, as my son would become
violent if I even talked with
them on the phone. My daughters could not socialise at home
for the same reasons. We became socially isolated and extremely depressed. We
lived with this problem daily and did our best to keep it from escalating to
the point where we had to call the Police. We were a family unit constantly on
the verge of collapse. Family and Police intervention didn't help. The only way
the police could help was if I pressed charges. Our only other avenue of help,
a support agency for the disabled, Care Connect, advised us to ring 000 - so we
continuously went round in circles. There is nowhere a Carer can go to get help
or protection from violence. Calling the Police is not the best way to resolve
domestic violence involving someone with a disability. This is a medical
problem not a criminal problem.[97]
4.92
The need to increase formal individual advocacy services for carers is
supported by many carers and organisations.[98] Carers Australia, which receives Australian Government funding to provide information and
specialist advice to carers, reported that they cannot keep up with the demand from
carers for formal advocacy services:
We have not done enough promotion of our services because we
cannot meet the demand. A lot of those families want individual advocacy, and
that can be very expensive, especially when you get into the legal side of
caring ... So there is a need to look at individual carer advocacy.[99]
4.93
Not all the evidence to the Inquiry, however, supported an expansion of
services targeted at carers. A community based, state-wide disability advocacy
agency providing advocacy services for children and adults with a developmental
disability in NSW, expressed their concerns:
... at the amount of funding that is being deflected from the
disability service system into programs for carers, as often the benefit is
aimed at the carer alone, is short lived and creates a demand for more of the
same. This is opposed to providing support which is long term, benefits the
person with disability equally, and builds on, rather than replaces, naturally
occurring supports.[100]
4.94
As with the arguments above for and against greater funding for case
management, arguments against funding carer advocacy reflect the overall lack
of resources for care receivers and carers alike.
4.95
The Committee notes that the Australian Government has undertaken to
improve service delivery and access to advocacy for people with disability, and
supports this commitment.[101] The evidence to the
Inquiry suggests further work needs to be done to recognise and support the pivotal
role carers play in advocating on behalf of care receivers and when required,
to provide carers with advocacy services in their right.
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. |
4.97
The Committee also suggests that the proposed extension to the NDAP be
accompanied by a change in program name to encompass both people with
disability and their carers, and to more adequately reflect the objective of
the National Disability Agreement to support:
People with disability and carers to have an enhanced quality
of life and participate as valued members of the community.[102]
Systemic Carer Advocacy
4.98
Systemic advocacy for carers is currently considered core business for
Carers Australia as the national peak body for carers and for the network of
state and territory Carer Associations.[103] Specific funding for
this is provided by DoHA. Some carers have commented positively in relation to
the systemic advocacy provided by the Carer Associations.[104]
Others have questioned whether the current arrangements represent the full
diversity of carer views.[105] For example, Ms Estelle Shields a long-term carer for her adult son with intellectual disabilities, stated:
[Carers], the workers at the coalface, must have an equal
voice with service providers and peak bodies and we must have our own funded
advocacy.[106]
4.99
Elaborating on concerns with the existing structures of systemic carer
advocacy, Mr Robert Gow a Queensland member of the National Carers Coalition,
said:
It is a fact that disability advocates and service provider
organisation peaks represent themselves and their constituents—that is, people
with disabilities and service providers respectively. It is a fact that their
role is not to represent the interests of carers. It is a fact that carer’s
advocates and disability advocates do not necessarily share the same concerns.
Certainly there are some crossovers, that is true, but it is a fact that the
two are not mutually inclusive. Please do not assume that because advocates and
peaks raise issues that involve carers that they represent carers.[107]
4.100
Ms Jean Tops, Victorian Liaison for the National Carer Coalition, also
proceeded to outline her concerns in relation to the dual role of the carer
associations as service providers and as advocates for systemic reform for
carers saying:
We want to make it very plain here that the carer
associations are in fact service providers. On their own admission, they
provide thousands of services to carers every year, and when they do that they
do an excellent job. It is inappropriate for service providers to also be
advocates for carers.[108]
4.101
To address these concerns the National Carers Coalition suggests that
there is a need for substantial reform to the current arrangements for systemic
carer advocacy, recommending the establishment of a new advocacy model, which
represents the interests of carers of people with lifelong dependent
disabilities.[109]
4.102
Ms Joan Hughes, Chief Executive Officer of Carers Australia, responded
to these concerns by noting:
There is an issue with lots of families who have not been
part of a system. They are families who would criticise disability advocacy
groups, carer advocacy groups and ageing advocacy groups, because they feel
like their voice has not been heard, and that is absolutely valid. We have a
role at Carers Australia, as the national peak body, to work with these groups.[110]
4.103
Specifically in relation to the dual role of Carer Associations as
service providers as well as providers of systemic carer advocacy, Ms Hughes proceeded to say:
Even though we are providing advice and services to carers,
we also have the capacity through our research and evidence to talk with
government about some of those strong issues.
... We also started as a grassroots organisation, and a lot
of people do not know the history. Seventy-five per cent of board members of
carers associations are current or former family carers. When you explain that
to people, they say, ‘Oh really?’ We have mums and dads who are presidents of
our associations, but we have not promoted that well enough. ... Carers Australia will continually fight for better support for those families, but we need to
bring those other groups in. I am very committed, and so is the board of Carers
Australia, to have meetings with some of those national alliances and see how
we can work together.[111]
4.104
Mr Andrew Stuart of DoHA, explained that it is not unusual for
government to fund organisations to provide both services and systemic
advocacy. Mr Stuart expressed that in his opinion:
Carers Australia is a very good and strong advocate that is
able to open doors in this House [the Australian Parliament]; I certainly do
not have any sense of any reticence because they are also a funded program
delivery organisation. I would just put on record that I particularly respect
the way that they always bring and give a voice to individual carers at the
functions that they manage.[112]
4.105
While the Committee acknowledges the concerns expressed by some carers
with regard to systemic carer advocacy, it notes that others have commented
favourably on the role of the Carer Associations in representing their views
and advocating for systemic reform. In view of the conflicting evidence, the
Committee does not believe that a compelling case for fundamental reform to
existing arrangements for systemic carer advocacy has been demonstrated. The
Committee also notes Carers Australia’s commitment to represent the full
diversity of carers, including groups that have not previously engaged.
4.106
Nevertheless, to investigate further the concerns expressed by some
carers, the Committee believes that a review of existing arrangements of
systemic carer advocacy may be beneficial. Specifically, the Committee
recommends that existing arrangements for systemic carer advocacy be examined
to determine how arrangements might be extended or reformed to further promote
representation and inclusion of the diversity of carers, with particular focus
on those that may feel that they are under represented.
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. |
Carers as Partners in Care
4.108
As discussed in chapter 3, carers and organisations are calling on the
Australian Government to formalise the recognition of carers through the
adoption of national legislation and a strategic policy framework. One element for
consideration is for formal recognition of the essential contribution of carers
in the care, treatment and management of people affected by serious medical and
mental health conditions. With changes in health, mental health, disability and
age care policies supporting shifts from institutional care to care at home,
carers are asking for recognition as partners in care by health, mental health,
disability and aged care professionals and by service providers.[113]
4.109
Carers in many different types of caring situations have commented on
the lack of recognition they are given by health professionals.[114]
Ms Michela Cardamone, an employed carer who works as a carer consultant in
the Psychiatric Disability Rehabilitation Support Sector in Victoria observed:
My own experience has shown me that when strong and trusting
relationships developed between my family member, the mental health
professionals involved in her care, and myself, a far better outcome was
achieved than any of us could have hoped for in caring for or treating her
independently. Sadly though, this has not been the experience of the majority
of carers I have come in contact with. Many, particularly those involved with
the adult mental health sector, describe being shut out, ignored, disempowered
and disrespected by the mental health system within which their loved one is
treated.[115]
4.110
The complexity of the issue, particularly for carers of people with a
mental illness, was raised by another Victorian carer, in the following comment:
The Confidentiality Act needs to be reviewed and understood.
Too frequently a seriously ill, often deluded family member will be placed in
hospital, and will be asked, in that state, if he, she wishes to have carers
informed of treatment plans etc. If the consumer does not want the carer
involved, the carer is out of the picture.[116]
4.111
The recognition of carers as partners in care would involve carers in
assessment, treatment, discharge and care planning and implementation, services
delivery, and monitoring.[117] The recognition and
involvement of carers as partners in care has a great deal to offer not only
the carers but the formal care team and the care receiver, for instance:
n carers can provide
valuable information and feedback to health care professionals;
n providing carers with
information, education and training and involving them in discharge and care
planning can increase compliance with discharge plans, prevent readmissions and
improve the quality of care; and
n during
hospitalisations, carers can support care receivers and act as quality
monitors, alerting staff to potential costly problems before they happen.[118]
4.112
The recognition of carers as partners in care has been included in some state
and territory government carer recognition legislation, mental health
legislation and health policies.[119] WA was the first
jurisdiction to enact carer recognition legislation. As Carers WA explained:
Within Western Australia state legislation, the health and
disability departments are expected to include carers as partners of health
professionals in care planning and to support carers own needs as a community
and family member.[120]
4.113
Carers SA raised the importance of educating service providers in
relation to such legislative and policy obligations:
... when it comes to building the participation of carers in
service delivery, and a genuine sense of partnership with them, many service
providers need guidance ... A comprehensive education and training program for
service providers on carers and the caring role is required if services are to
have the capacity to respond to developments arising from the State
Government's Carers Recognition Act 2005 and SA Carers Policy. [121]
4.114
The issue of recognising carers as partners in care with health and
community care service providers raises complex issues about balancing the
needs and interests of carers, care receivers and service providers. The
submission from the Royal Australian and New Zealand College of Psychiatrists
commented on the complexity in the mental health sector:
The involvement of family carers in the care of their family
members with severe disability from mental illness is complicated by legal,
ethical, bureaucratic processes that are often complex and difficult to
navigate and ‘cultural’ issues. For instance, there may be confusing agendas
between traditional ethical notions of confidentiality, privacy principles and
legal obligations under the various State mental health acts. It is, however,
noted that a duty to inform family is contained within Australian model mental
health legislation and further enacted in some Mental Health Acts such as
current NT legislation. While privacy is a valued right and needs to be
protected it is imperative that other rights and responsibilities that protect
the safety and quality of people's lives are also balanced in considerations.
This is a complex area, but one that warrants review.[122]
4.115
In its submission the Mental Health Council of Australia also called on
governments to review policies in relation to confidentiality:
Mental health carers are often excluded from involvement in
care due to privacy and confidentiality provisions. There is an urgent need for
such policies to be reviewed and for a nationally consistent policy to be
developed to clarify, for both service providers and carers, what can and
cannot be shared in the absence of patient consent ...[123]
4.116
The evidence strongly indicates that the involvement of carers as partners
in care with health, mental health and community care service providers, can have
positive results for all involved. This benefit needs to be balanced with the
right of care receivers if they wish for privacy. The Committee understands
that this is a vexed issue, particularly in relation to people who suffer
episodic mental illness. However, there is considerable support from mental
health professionals for the inclusion of family members who play key roles in
the care and support of people with mental illness.
Health information privacy in
particular, is a complex issue bound by Australian Government, state and
territory legislation and regulation and professional codes of conduct.
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. |
Substitute Decision Making
4.118
Under various state and territory legislative regimes, carers, in
certain situations, can act as substitute decision makers for care receivers.
In instances where a care receiver has a disability which impacts on their
decision making ability, carers may seek formal guardianship through state and
territory Guardianship Boards and Tribunals. Such powers can provide carers
with the authority to make decisions on behalf of the care receiver.
4.119
There are also various provisions under state and territory legislation
for a competent adult to appoint an enduring guardian or an enduring power of
attorney to make personal decisions and manage financial matters on their
behalf if the time comes when they are unable to do so for themselves.[124]
However, these arrangements are not straightforward:
... current legal provisions relating to enduring powers of
attorney and advance care directives are complex and vary across the
jurisdictions; terminologies are confusing and inconsistent and all too often
the wishes of the person with dementia are not appropriately followed.
Currently the opportunity of advance decision making is underutilised.[125]
4.120
There is a lack of awareness in the general community of issues in
relation to substitute decision making, including guardianship, enduring powers
of attorney and advanced care directives. Alzheimer’s Australia points out that:
Research has demonstrated that not all health professionals,
including general practitioners are well informed about the enduring powers and
advance directives and may lack the time or skills to assist people with this
process. Lawyers also vary in their knowledge of the issues confronting people
with a recent diagnosis of dementia.[126]
4.121
The NSW Guardianship Tribunal’s submission suggested:
... it would be beneficial to provide accessible and
extensive community education to increase awareness of the legal options
available for the appointment of substitute decision makers. Increased
community education about enduring guardianship and enduring power of attorneys
would be beneficial. It is important that such education also clarifies the
duties and obligations of appointed substitute decision makers to always act in
the best interests of the person with a disability.[127]
4.122
A number of jurisdictions also have legislative processes to govern the
use of ‘advanced care directives’ which enable an individual to make a
statement about how they wish to be treated and who they wish to be involved in
their treatment at a time in the future should the individual not have the
capacity to make health care decisions for themselves. The evidence contained a
degree of support for the use and promotion of advanced care directives. The
Mental Health Council of Australia stated:
A practical way to overcome the problems associated with
protecting the privacy and confidentiality of the person with the mental
illness is to develop Advance Directives. Advance Directives allow consumers,
when they are well, to plan what they would like to happen to them if they
become unwell, and provides
carers with a clear outline as to what extent they should be
involved in treatment and recovery planning. Although Advance Directives may
explicitly exclude carers from involvement in a person's care, they are a
powerful and practical tool that can easily circumvent current privacy and
confidentiality legislation with the prior permission of the person with a
mental illness … An Advance Directive pro-forma, that is legally valid in all
states, should be developed so that consumers are able to decide what care they
receive and who should be involved. Not only will this clarify the role of
mental health carers, it will also lead to improved outcomes for the person
with a mental illness as it can be used to guide treatment based on what has
worked in the past for a particular person.[128]
4.123
For people with dementia and their carers, there can be significant
problems when advanced care directives or enduring powers of attorney are not
in place. As explained by Alzheimer’s Australia:
While informal arrangements can often work well in families,
many individuals with dementia and their family carers encounter significant
problems when wishes for future care and decision-making are unknown.
End-of-life care can also become more difficult in the absence of advance
directives. If powers are not in place the guardianship law may have to be
utilised.
An increasing number of people with dementia who have not put
enduring powers in place are referred to Guardianship Tribunals across Australia. Approximately 50% of all referrals relate to people with dementia.[129]
4.124
The Committee is aware of the complexity of issues which confront carers
in relation to the area of substitute decision making, including guardianship,
enduring powers of attorney and advanced care directives. The evidence provided
to the Committee suggests that the use of enduring powers of attorney and advanced
care directives can be further utilised and that a uniform national approach is
desirable.
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. |