Chapter 6 Access to Supports and Services
6.1
This chapter considers issues relating to the access and effectiveness
or otherwise of current community care services for carers. The chapter will:
n examine issues
associated with the availability and accessibility of community care services
for carers, including carers living in regional and remote locations and
Indigenous carers;
n examine issues associated
with the availability, accessibility, affordability and quality of respite
services for carers; and
n examine issues
associated with the availability, accessibility, affordability and quality in-home
assistance for carers.
6.2
This chapter will also consider the need and options for structural
and/or fundamental reform to community care systems.
6.3
Finally the chapter will consider the importance for carers of access to
adequate community care services for care receivers.
Community Care Services
6.4
The broad community care system for carers and care receivers is made up
of a number of different service systems, namely:
n community care
services;
n aged care services;
n specialist disability
services;
n community mental
health services; and
n veterans’ care
services.
6.5
In addition, carers and care receivers using these services may be
accessing other services in the health, mental health and palliative care
sectors, as well as other services provided through education, employment, housing,
transport and income support. The adequacy of all these services, individually
and collectively, directly affect the quality of life for carers and care
receivers alike.
6.6
Community care services have evolved to help improve the capacity of
people with a disability, chronic illness, mental illness or frailty to live
independently or, in circumstances where informal care is provided by family
members or friends, to support the carers to provide adequate and sustainable
care. In these circumstances, community care services are either targeted to
support:
n care receivers
directly, while possibly also indirectly alleviating the caring
responsibilities of carers; or
n carers directly,
while also aiming to meet the needs of care receivers.
6.7
Based on their experiences, carers have raised a diverse range of issues
and concerns relating to community care systems and services for carers and for
care receivers. Carers and organisations report that not only is it difficult
to discover and access appropriate community care services, but where they are
available – and often they are not – they may not be of adequate quality.
The Accessibility and Availability of Community Care Services
Navigating the Service Maze
6.8
A common theme from carers is that the current array of community care
services is too complex and confusing for those trying to identify and access
services.[1] The complexity of
community service systems derives from a number of factors, including:
n the linked but
different needs of care receivers and carers;
n the multiple
portfolio and program areas across all levels of government that are involved
in the funding and administration of community care services;
n the separate service
systems which provide assistance to carers and care receivers, namely, the
community care, aged care, disability, community mental health and veterans’
care services; and
n the involvement of
government and not-for-profit and for-profit non government organisations in
the delivery of services to carers and care receivers.
6.9
The result is that carers may have to identify community care services
for themselves or their care receiver from different government departments and
agencies, across different levels of government and delivered through a range
of community or private sector organisations. These fragmented and complex
service systems have resulted in a ‘service maze’, which is a source of
frustration to carers. Furthermore, once services are identified, carers and
care receivers are then confronted by varying eligibility requirements and assessment
processes to access them.[2]
6.10
The experiences recounted below are typical of the frustration
experienced by many carers trying to navigate community care systems to
determine what services are available to support them or their care receiver:
Ms Kerry Ferguson – sole carer
for a 22 year old with Cantu Syndrome
I am continually frustrated by the
process to procure funding, services, packages, shared supported accommodation,
case management and respite. Applications are not always clearly developed or transparent.
It is a repetitive process that is impersonal, time consuming, highly
frustrating and costly. Upon completion, even if the criteria are met, there is
no guarantee of a successful outcome. This is directly due to funding
shortfalls. Therefore, families are denied choice and there is no availability
or flexibility. You may make several applications, attend requested meetings or
make numerous telephone calls, all to no avail. There are few services that
will accept applications for support and have established waiting lists.[3]
Ms Carey Sebbens and Mr John
Doyle - carer for their fourteen year old son with complex care needs
There is an incredible maze of
carers services, recreational, respite, post school options, advocacy,
specialists, specialist medical experts etc that are very difficult to
navigate. Basically the only way you find out about services your family member
maybe eligible for is through word of mouth which is extremely frustrating and
distressing especially when you learn of a service that may have benefited the
person you care for years too late to make any difference.[4]
Ms Anne-Marie MacArthur - carer for her elderly mother
Although services are available to
carers trying to access those services is akin to being in an ever increasing maze
with illegible signposts so that the carer never really knows where to go or in
which direction to take. To add to this mix the carer, in this case myself, is
physically exhausted and emotionally spent. Not a happy combination when trying
to understand bureaucratic-speak.[5]
Ms Megan Major –
provides care for her husband with Parkinson’s Disease and Lewy Body Dementia
following a stroke
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, Saw Saw 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'.[6]
6.11
Even for carers seeking to access a single type of service, such as respite,
the challenges of navigating the maze are still immense as explained in the submission
from the Macarthur Aged and Disability Forum:
There are so many services that have been set up for respite
but all of them are run by different agencies and have different guidelines. In
Macarthur no one service provides the range of respite options carers require.
Funding has been made available however the competitive process has resulted in
a confusing mish mash of services. Add to this the confusion caused with
different guidelines for every State, Federal and State/Federal funded programs
and people who work in the sector have difficulty making sense of it all,
imagine a carer who is already stressed, tired and at their wits end finally
deciding to get some respite and they are faced with the above - giving up is a
very practical option.[7]
6.12
The problem of finding suitable services is particularly challenging for
carers from culturally and linguistically diverse (CALD) backgrounds. The submission
from the Centre for Cultural Research, University of Western Sydney, identified
the need for ‘cultural competence’ to successfully navigate and negotiate the
community care system:
The capacity of carers to find information, make contact and
negotiate services was influenced by what we describe as ‘cultural competence’...
This encapsulates knowledge of how the system of community and social care
works, including the culture of service delivery, language of care provision,
and the power structures within and across both government and non-government
organizations. The fact that many carers, particularly CALD carers, knocked at
the wrong doors, did not know or use the 'right' language, and/or disclosed
needs to the wrong person resulted in frustration and led to many participants
taking on an excessive burden of care.[8]
6.13
With such a splintered array of services, carers and care receivers may find
that their individual circumstances do not allow them to be pigeonholed neatly
into a single support category. This can create difficulties for carers navigating
service options in determining, for example, whether the disability or mental
health service system is responsible for supporting a care recipient with an
intellectual disability and a mental illness.[9]
6.14
It is not only carers of people with multiple medical conditions who are
faced with the challenges of accessing services across service systems. MND [Motor Neurone Disease] Australia, made the point that care provision for people with
neurological conditions also often cross over a number of service systems over
time:
Care provision for people with MND crosses traditional
departmental boundaries including; health, disability, aged, chronic disease
and palliative care and involves a combination of local, non-government, state
and federal funding bodies: it does not fit into a single established funding
stream. People with rapidly progressive neurological disease and their carers
struggle to navigate this complex system. ... Carers consistently report to MND Associations that they become lost in the service provision maze.[10]
6.15
To some extent the difficulty facing carers in navigating the complex
community care services could be alleviated by the provision of a single access
point for information and increased access to case management services. The
Committee has acknowledged this, at least partial solution, in recommendations made
earlier in the report. Another partial solution is to streamline community care
services through improved coordination and structural reform and this is
addressed later in this chapter.
Eligibility and Assessments for Accessing Services
6.16
A by-product of having many, fragmented and narrowly focussed services
is that carers and care receivers are forced to undergo multiple eligibility assessments
before they can access services. Carers WA described carers and care receivers
experiencing ‘assessment fatigue’ from the onerous assessment requirements:
The amount of assessments for essentially the same
illness/disability and [care] situation is a barrier in itself. Many carers and
care receivers have 'assessment fatigue' from the amount of hoops that they
have to jump through - many just do not bother asking for help, knowing that
they would have to go through the assessment process again. For some, it may be
easier to stay home themselves and provide all of the care, rather than being
assessed for a service that may not be available, or at a convenient time, or
that is not meaningful for the care recipient.[11]
6.17
While the needs of carers may be considered when the needs of care receivers
are being assessed for services, some evidence to the Inquiry has argued that
it is important for carers to also have the option of a full assessment of
their needs in their own right. For example, Carers SA suggested:
... carers not only have the right to be assessed
independently of the care recipient but also should have the results of that
assessment taken into account for the provision of services. This would offer a
protection to carers to have their needs taken into account at that time.[12]
6.18
The reality is that there is no nationally consistent approach to
assessing the needs of carers, or even a common language for defining need. In recognition
of this, the Department of Health and Ageing (DoHA) in conjunction with the
state and territory governments and the community care sector is developing
national assessment tools for assessing carer needs including the Australian
Community Care Needs Assessment-Revised (ACCNA-R) and the called the Carer
Eligibility and Needs Assessment-Revised (CENA-R). The CENA-R is intended to be
used for DoHA’s carer related programs and services.[13]
Each carer assessment will consider:
n the extent of care
hours required to assist the care recipient;
n an estimate of carer
health;
n the development of a
coping profile which notes challenges and supports for the carer, an evaluation
of carer burden, and an assessment of carer mental health and well-being; and
n a screen of the
physical capabilities of the carer to assess whether they themselves require
supports and services. [14]
6.19
The Committee supports any initiative to minimise the bureaucratic
burden placed on carers and welcomes the CENA-R initiative. The Committee
believes that further development and application of the CENA-R should aim to
fully utilise the CENA-R as a national assessment tool for carers across all
Commonwealth, and state and territory government services and programs. The
Committee, however, also recognises that it may be difficult to integrate CENA-R
as an assessment tool with the eligibility requirements for payments delivered
by Centrelink.
6.20
However, the possibilities of linking the CENA-R to the current development
of a single assessment process for Carer Payment and Carer Allowance[15]
should be considered in terms of the Committee’s previous recommendation in
relation to the acceptance of recent supporting documents to verify claims for
Care Payment and Carer Allowance.
Recommendation 29 |
|
That the Minister for Families, Housing, Community Services and
Indigenous Affairs and the Minister for Health and Ageing seek agreement
through the Health, Community and Disability Services Ministerial Council to expand
the nationally consistent assessment process based on the Carer Eligibility
and Needs Assessment-Revised questionnaire.
This will need to ensure the inclusion of carers accessing
services offered through the Department of Families, Housing, Community Services
and Indigenous Affairs and the state and territory governments. |
6.22
The ultimate goal should be to reduce the requirement for carers and
care receivers to undergo multiple assessments in order to access services
within and across sectors.
6.23
Some evidence emphasised that carer assessments should take a ‘whole of
family’ situational approach to take into account the needs of primary carers and
secondary carers who may also support a care recipient.[16]
Whatever else, the eligibility criteria for services, funding and other
supports needs to be flexible enough to accommodate the diversity of caring
roles.[17] The Committee was also reminded
by the Disability Council of NSW that any carer assessment needs to be done on
the basis that the care recipient also has their support needs assessed.[18]
In fact the needs of carers cannot be assessed without taking into account the
needs of care receivers.
Community Care Services in Regional and Remote Locations
6.24
Evidence to the Inquiry indicates that carers living in regional and
remote areas often face particular challenges accessing community care services.
Services may simply not be available locally, forcing carers and care receivers
to travel sometimes long distances.[19] As Carers Australia
explained:
Carers in these areas will often not have access to the
internet, will need to travel long distances to access health professionals,
information and support programs, will need to rely on other relatives or
friends to care for other family members and their place of residence while
they are travelling and will have additional costs associated with travelling.
This has become particularly difficult with the increases in petrol prices.[20]
6.25
In a specific example, the Horsham Family Advisory Committee, an
advisory body to the Ballarat Health Services Psychiatric Service, pointed out the challenges facing regional and
remote area carers of those with a mental illness:
Mental health family and carers need to travel large
distances to access specialised services in regional centres or cities and
therefore face increased financial costs for travel. As well there is a lack of
accessible public transport options in rural areas which adds to the family
burden when an individual with [mental illness] becomes so unwell that they cease
driving.[21]
6.26
Carers Australia suggested delivery of supports and services for carers
living in regional and remote areas using a variety of means to suit individual requirements:
Carers in rural and remote areas of Australia need access to support programs, education and training, information and
resources to be delivered by a medium that suits their individual needs and
requirements. This could be through the internet, DVDs or in-home support by
visiting service providers. It is absolutely critical that when addressing the
needs of Australia’s carers, the Committee has a particular focus on how best
to meet the needs of those carers living outside metropolitan and large
regional centres.[22]
6.27
The Committee understands that providing any services in regional and remote
areas can be difficult. Later in the chapter the Committee makes
recommendations to address the shortages of health and community care services
for carers generally. While recognising that these shortages are a national
problem, the Committee encourages the Minister for Families, Housing, Community
Housing and Indigenous Affairs and the Minister for Health and Ageing to
consider the particular difficulties carers and care receivers face accessing
services in regional and remote Australia. Later in the chapter, the Committee
also examines the potential of individualised funding models to give carers and
care receivers greater control over the services they receive. Potentially
these models will allow carers in regional and remote areas to make maximum use
of existing local resources and infrastructure.
Recommendation 30 |
|
That the Minister for Families, Housing, Community Services
and Indigenous Affairs and the Minister for Health and Ageing address the
shortages of health and community care services for people living in regional
and remote locations. |
Community Care Services for Indigenous Carers
6.29
The Committee received limited evidence from or about Indigenous carers.
The fact that Indigenous carers often do not self-identify as such because many
see caring as a natural extension of family duty also reduces the likelihood of
their seeking any assistance from community care services. [23]
This issue of carers not identifying themselves as such is considered earlier
in the report.
6.30
However, even when assistance is sought it appears that Indigenous
carers face particular challenges in accessing appropriate community care
services.[24] Evidence has emphasised
that a mix of Indigenous specific services and culturally sensitive mainstream
services for Indigenous carers and care receivers is important.[25]
One Indigenous carer who did contribute to the Inquiry suggested that Indigenous
carers and care receivers would make greater use of mainstream disability and
aged care services if the services employed more Indigenous health workers.[26]
6.31
Although it appears that even in urban areas, Indigenous people can face
difficulties accessing services, these difficulties are likely to be magnified
for Indigenous carers living in rural or remote areas. The evidence that has
been put to the Committee paints a stark picture of the challenges:
Remote communities are difficult to service. They are reached
usually by four-wheel drive or by air. The road option takes time, the air
option is expensive. Most contact to the Carers NT by carers is through health
centres and by telephone. The telephone system
can be very problematic. Many carers have only limited access
to a phone to make outgoing calls, and often, no access to incoming calls.
There is usually only one solar powered public phone on a community often not
in working condition.[27]
6.32
However, the lack of definitive information on the specific needs of
Indigenous carers poses a significant problem for those seeking to provide
community care services that are adequate and culturally appropriate.[28]
As explained by Carers Australia:
In the light of what is known, it is possible to conclude
that Indigenous carers and the people they support are significantly worse off
than the majority of caring families. However it is difficult to bring before
the Committee precise evidence about the circumstances and needs of Indigenous carers.
Caring has not been a specific focus of the considerable research and
consultation on needs or the development of national strategies to improve
health outcomes and address other aspects of disadvantage and discrimination.
There is little documentation of the way in which caring is occurring within
communities, who is caring, the resources and supports that people are drawing
on, the needs of family members providing care or the extent to which carers
and families have access to services.[29]
6.33
The Committee is concerned about the lack of evidence to the Inquiry from
Indigenous carers, but more so about the more general the lack of information about
the profile and needs of Indigenous carers. The Committee believes that further
research on the specific needs of Indigenous carers, particularly as these
pertain to community care services is required.
Recommendation 31 |
|
That the Minister for Families, Housing, Community Services
and Indigenous Affairs fund research into the profiles and specific needs of
Indigenous carers. |
Recommendation 32 |
|
That the Minister for Families, Housing, Community Services
and Indigenous Affairs and the Minister for Health and Ageing examine the adequacy
of culturally appropriate community care services funded by the Australian
Government for Indigenous carers, particularly for those living in remote
areas, with the intention of increasing the accessibility and availability of
those services. |
6.36
This latter recommendation is a special case of the more general
recommendations made later in this chapter. However, the Committee believes that
the dearth of information on Indigenous carers, their needs and the services
(or lack thereof) available for them warrants special attention.
6.37
The Committee would also like to see improved outcomes for Indigenous
carers reflected in the Council of Australian Governments (COAG) National
Indigenous Reform Agreement in the future.[30]
Respite Care Services and In-Home Assistance
6.38
In evidence to the Inquiry, carers identified a range of services for
carers as being either unavailable, not available to the extent required, too
expensive or failing to meet the needs of the carer and/or the care receiver.
The shortages of case management and advocacy services have already been
discussed in earlier chapter 4. However, the two services that were repeatedly
mentioned as being of critical importance for carers, and also in short supply,
are respite care and in-home assistance.
Availability of Respite Care Services
6.39
Respite services are defined by the Australian Bureau of Statistics as
formal respite care which allows carers time for other activities which may be
tasks related to their caring role or engagement in other activities
related to the carer’s own
needs.[31] There are various forms
of respite, which includes in-home respite either in the carer’s presence or absence,
or residential respite where the care receiver is cared for away from the
family home, either overnight or for a longer period.
6.40
Many carers have indicated that access to appropriate, affordable,
timely and regularly planned respite, as well as emergency respite when
required, is crucially important in providing carers with a degree of choice in
relation to the caring role and the ability to balance caring with other
aspects of their lives. Furthermore, access to adequate levels of respite care
is critically important in order for many carers to continue in their caring
role.[32] Not surprisingly, the
need for respite is greatest for carers with multiple care responsibilities or
in circumstance where the intensity of the caring role is high.
6.41
The following accounts are typical of the experience shared by many
carers, emphasising both the importance of respite to them and the difficulties
that many face in accessing these services:
Ms Sharon Guest and Mr Stuart
Neal – carers for their daughter mild to moderate hearing loss, autism,
moderate to severe global developmental delay, and the rare and fatal illness Sanfilippo
Syndrome
We had to phone up respite
organisation after respite organisation, repeating ad nauseam our
devastating situation, only to be channelled elsewhere or told there was
nothing on offer.
It took hundreds of phone calls to
be either told that no services are available or that we could be put on a
waiting list but that this would probably take years to bear fruit. Commonly
our calls weren't returned. We endured this for six months - and got nowhere. ...
It also became abundantly clear that respite is very limited. Any respite -
should you get it – is short term. Our situation was not short term. It was
going to get progressively worse. We were horrified to discover that there is
nothing available of any consequence for families such as us who are simply
left to cope on their own.[33]
Ms Glenis Hawthorne
– long term carer with her husband for their daughter with intellectual and
physical disabilities
Insufficient respite services are
made available. In our caring role with our child, we have provided care for
all but three nights in twenty seven years. There appears to be endless ‘packages’
to support the aged but very little available to support families who are
caring for children with disabilities. What happens when you wear out the
Carers and they are no longer able to fulfil their caring duties? Give us all a
break before that happens!
Ms Oi yun Leongue - mother of four
children, two of whom have autism
... there is a shortage of respite
houses in my local area. The respite house my daughter currently attends is
always unavailable for weekend bookings and we are always on the accommodation
waiting list. As the Mother of two autistic children, my husband and I need a
break. We are only given seven hours of respite per week and the years and
years of stress and anxiety have taken a toll on our health. If this level of
stress and worry continues, I fear we will soon reach our breaking point. We
urgently need help now, in the form of more respite.[34]
6.42
Many service providers also frequently reported that the supply of
respite services is not keeping pace with the demand. As the Australian Red
Cross explained:
Carers manage until they cannot manage. We cannot afford to
then say, ‘Oh, but we haven’t got the services today or tomorrow; how does next
week or next month suit you?’ because carers are at breaking point and they are
not very good at putting their hands up and asking for help. We take six of
those calls a day, and it used to take us one or two calls to put respite in
place for them. It can now take us 10 calls to put respite in place for them.
It is getting harder to find appropriate services that can cope with the
numbers that are coming through and the complexity that is coming through.[35]
6.43
The shortfall in respite services appears to be national and across the
various respite service options. Ms Margaret Fisk, the National Coordinator of
the Defence Special Needs Support Group, which provides supports to Defence
Force families caring for a family member with a disability or special needs, provided
a national perspective:
Respite waiting lists in many areas are closed or are
extremely long with agencies reporting that they not taking any more referrals.
For example in Townsville, the majority of respite is geared towards those
caring for the elderly so if you relocate to Townsville and you care for a
severely disabled member of your family, it is highly unlikely that you will
receive any respite support for quite some time (other than short term or
emergency offered by the CCRC) [Commonwealth Carer Respite Centre]. Similar
situations occur in Canberra, areas of Melbourne, Sydney and Brisbane.[36]
6.44
The situation in Western Australia seems similar:
Carers Advisory Council members have had opportunities to
consult with carers in both metropolitan Perth and regional Western Australia.
... Without exception the lack of respite services and the lack of respite
options is raised in these forums. In particular, carers comment that
emergency, overnight, short and long stay options are often not available
unless booked well in advance.[37]
Affordability of Respite
6.45
Services like respite need not only to be available, but also to be affordable.[38]
The cost of respite care services, particularly overnight respite, can be
beyond some carers. Many carers on low incomes find the costs associated with
accessing respite and other support services unfair and unrealistic. The
priority for one carer was:
Realistic and affordable respite that Carers can afford to
pay. They get paid a pittance for doing the same job, so can hardly be expected
to afford the ridiculous rates charged.[39]
6.46
A typical situation was described by Ms Beverley Schulz who cares for
her 22 year old daughter:
Carers need more respite hours/nights per year to be made
available, at less dollars per night. At present we pay $25.00 p/night so have
had to cut back on how often we access respite ... We simply can’t afford to
pay $25 for night stays.[40]
6.47
Another carer, Ms Helen White who provides care for her 17 year old son
with significant intellectual disability and autism also called for more
affordable respite options, recounting:
I had one respite provider price out from 3 pm Friday until 9 am Monday at over $3000! Clearly my son will not be going there![41]
6.48
The impact of the cost residential aged care respite on a household
income was also raised by Mr Peter Aris, a Tasmanian carer, who cares for his
wife:
We are allowed at present nine weeks a year for respite. How
can we possibly afford respite when the full pension is taken off the patient
when they go into respite care? Most carers cannot afford to take respite. No
wonder their health deteriorates. I believe carers should have a higher
financial status than that of pensioners due to their greatly increased costs.[42]
Respite Needs to be Flexible
6.49
For carers to have a degree of choice in their own lives, respite care
services should be flexible enough to meet the needs of both carer and carer
receiver. However, there appears to be limited opportunity to tailor respite
services to the needs of the carer, the care receiver or both.[43]
Some carers have observed that the respite services offered appear to suit the
funding priorities and organisational structures of the respite providers
rather than the needs of their clients.[44] As acknowledged by the Western
Australian Government, providing respite should require flexibility and
consideration of diverse client needs:
The very great challenge for respite is to be sufficiently
flexible and responsive to meet the individual physical, emotional, financial
and cultural needs of carers and the persons they care for within a wide range
of changing economic, social and environmental situations and circumstances.[45]
6.50
A number of submissions identified the need for the timing and duration
of respite to be more responsive to the needs of carers, for example, to be
provided overnight, on weekends or during school holidays.[46]
While some carers emphasised the importance to them of overnight or residential
respite to allow them time away from their caring role[47],
others expressed the preference for respite to be provided in the home setting.[48]
6.51
Yet others have suggested that more respite be provided in such a way
that it allows the carer, the care receiver and their families to spend quality
time together in a supportive setting. For example, Mr Frank Poole, who
provides care for his wife with severe physical disabilities suggested:
It would be nice if facilities existed for the carer and the
cared for to be able to have a weeks respite together where there was someone
to do the housework and cooking and give the carer a break at least from these chores
but still not feel guilty about leaving a loved one in someone else's care.[49]
6.52
Evidence suggests that accessing respite is particularly challenging for
carers of people with dual diagnosis or high level and/or complex care needs.[50]
For example, Ms Careen Dew, a young carer who assists in providing care for a
younger brother with multiple disabilities, explained that her family did not
meet eligibility criteria for many respite services as his case was classified
as a ‘medical’ problem rather than as a ‘disability’. As a result, Ms Dew noted:
Over the past nine years we have only had respite during the
night twice, so it is something that we definitely need. For some reason we
have to apply every six months with these respite agencies and we are still
being refused and rejected just for little amounts of time, four hours here and
there.[51]
6.53
In the case of younger care receivers (i.e. under 65 years) with high
care needs, another criticism repeatedly made is that often the only respite
option available is in an aged care facility – an option resisted by many. As explained
by Ms Glynis Thyer, who provided care for her husband (now deceased) with
multiple sclerosis:
To place a person in their 20's, 30's 40's or 50's in an Aged
Care Facility for respite is incredibly difficult for their Carer. The person
in need often fights/opposes the idea of going in to respite, especially in to
a place that is not suitable to their needs. This puts added emotional pressure
on the Carer.[52]
6.54
Carers reported not using respite services because the only option available
to them was a placement in an aged care facility:
I would love there to be more respite care accommodation for
my husband that is not an aged care facility. It is not fair to think that
when I need a rest I have to put him in an old person’s home
so rather than do that I try to carry on the way things are now and not have a
rest.[53]
6.55
The need for respite to take into consideration cultural issues was also
raised in evidence.[54] At a hearing in Sydney, Ms Beatriz Cardona provided the Committee with a number of situations where community
care services had failed to accommodate specific cultural or religious
requirements. The following example relates to an elderly carer from Macedonia who
refused the offer of respite on the basis that she could not accompany her
daughter who has a disability:
This example highlights how concepts such as carer and
respite resonate differently among different communities and individuals. The
label ‘carer’ is often difficult to translate because it is partly embedded in
a diversity of family rules and caring relationships. Moreover, the notion of
respite for this family meant that both daughter and carer needed the respite,
which did not equate with separation and nor did it equate with the notion of
her daughter being a burden. The service was unable to meet the reality of this
family’s specific needs. We also have the issue of quality of service
available. Part of the reason the mother wanted to go with her daughter was
because of her concern that her daughter may not be adequately cared for.[55]
6.56
As mentioned earlier, respite options in regional or remote areas are
often more limited than in urban areas, meaning that facilities are some
distance away, and then are sometimes still unsuitable. Carers NT explained the
situation for people living in remote communities in the Northern Territory:
... until recently the only respite that could be provided
was to fly the care recipient into Darwin and place her/him into a nursing
home. Carers, the wider community and the care recipient resisted this option ...[56]
6.57
The unsuitability of this respite option for Indigenous care receivers
and carers living in remote locations was further explained by Carers NT:
Indigenous culture is absolutely associated with the land
that is owned by the various groups. This connection inculcates the very
essence of the people who believe that they belong to the land, rather than the
land belonging to them. This connection is such that care recipients do not
want to be taken from their land to attend hospital or access respite outside
of their country. Older people are terrified that if they are placed in a
nursing home in one of the urban settings, to provide their carer with respite,
they will die away from their land. For example, out of 57 carers registered on
one community only 5 care recipients agreed to access respite by coming into Darwin.[57]
The Urgent Need for More Respite
6.58
The overwhelming evidence received by the Committee indicates that
respite services are an essential support for sustaining carers in their caring
role. The unmet need for respite services results in increased levels of stress
for carers, their families and those being cared for, reduced economic and social
participation and reduced levels of health and wellbeing.
6.59
The evidence suggests that current respite services are unable to meet
the need from carers for both emergency and short term respite, as well as for
planned, regular respite services. Access to those services that are available
is often prioritised on the basis of the degree of urgency or severity of the
caring and family situation. What alarmed the Committee however, is that this
approach places carers and their families in the invidious situation of needing
to present the worst possible picture of their circumstances. One carer
explained an assessment process to access respite services used by the NSW Government
in the following terms:
It would also be less stressful if families did not have to ‘beg’
each year for these services, currently families are assessed each year and
given points ... more points are scored if your marriage is breaking down, more
points if you are depressed, more points if a family member is dying![58]
6.60
The Committee sees the shortage of local, timely, and appropriate
respite services as one of the key issues facing carers. At the same time, services
also need to be flexible, culturally appropriate, easily accessible and
affordable. Many of the criticisms of respite services are manifestations of
the fundamental problem that there are simply not enough respite services to
meet demand. Ultimately, there needs to be more respite services which, in
turn, requires a financial commitment from the Australian Government.
Recommendation 33 |
|
Recognising the ageing demographic of the carer population
and the increased longevity of many care receivers, that the Minister for
Families, Housing, Community Services and Indigenous Affairs and the Minister
for Health and Ageing increase capital and recurrent funding for respite care
services funded by the Australian Government as a matter of urgency to more
closely match demand across the country.
Particular attention should be paid to improving the:
n
availability and accessibility;
n
affordability;
n
responsiveness to the needs of both carer and care receiver of
respite services; and
n
responsiveness to the needs of carers and care receivers in living
regional, rural and remote areas. |
6.62
The Committee is conscious that state, territory and local governments
also fund and administer respite services and that any increase in services by
the Australian Government should not be offset by a diminution in services by
other jurisdictions. Indeed the review process being undertaken by the Council of Australian Governments (COAG) discussed in chapter 1 and below will be an
ideal mechanism to ensure that the provision of respite is increased without
cost shifting or another round of the ‘blame game’ between governments.
In-Home Assistance for Carers
6.63
Many carers have identified in-home assistance or support as being
highly valued.[59] The main forms of in-home
assistance include:
n domestic assistance
(e.g. assistance with household jobs such as laundry and ironing etc);
n assistance with
personal care for the care receiver (e.g. assistance with bathing, showering
and toileting etc); and
n assistance with general
care and maintenance of the home and yard (e.g. changing light bulbs, lawn
mowing and gardening etc )
6.64
Currently these types of in-home assistance are provided for people with
a disability, for the frail aged and for their carers through the Home and
Community Care (HACC) program. As noted earlier in the report, HACC is jointly
funded by the Australian, state and territory governments, although the states
and territories manage the day to day administration of the program. For the
frail aged and their carers, in-home assistance is also available through the
Australian Government’s Aged Care Packages[60], and for veterans and their
carers, though the Veterans’ Home Care program.
6.65
As with respite services, evidence suggests that the demand for in-home
assistance for carers exceeds supply, and that the levels of assistance when
available are not adequate.[61] An older carer, Mr Noel Sweeney, saw his priority need as a carer as:
Access to reliable home help. Some charities can help, but
how clean could your house be with a half - hour's cleaning a fortnight?
It would be a total change to my life if there were more
realistic help forthcoming. I eagerly look forward to stepping outside my front
gate one day, knowing that I don't have to do everything on my own.[62]
6.66
Similarly, Mr Frank Poole, another older carer, suggested that elderly
carers would benefit from:
More assistance to carers in the house cleaning, ironing,
vacuuming side would be appreciated, as many carers are themselves elderly and
in my case with having to support my wife and do these chores my own back is
beginning to feel the strain and I am concerned that a time will be reached
when my back will not allow me to care for my wife. Anything that can stall
that off will be an advantage to all.[63]
6.67
A carer with multiple caring responsibilities, Ms Diana Lamond, stressed
the importance of adequate levels of domestic assistance and requested:
More domestic assistance. Queensland Health send a person to
clean on a fortnightly basis - 2 hours. Running a home with two disabled men is
exhausting. There is always housework, ironing, washing, shopping.[64]
6.68
Carers of young children have also commented on the value of in-home
help. For example, Ms Trish Welstead, the mother of two daughters one of whom
has Cystic Fybrosis, explained that practical domestic assistance would be
extremely helpful to her and her family, especially during periods when her
daughter was hospitalised:
When Zoe goes into hospital, she stays for two weeks at a
time minimum. I stay with her for most of that time and my husband stays for
some days. By the time I get back home, I have a whole house to re-organise and
try and catch up with washing, cleaning the toilet, bathroom, etc. My husband
works long hours and only just manages to get our other daughter organised and
off to school every day ... If it weren't for my parents who are in their late
60s and late 70s, I literally would not survive these times.[65]
6.69
However, not all applications for domestic assistance are responded to
positively. Ms Carmel Flavell, a sole parent carer, who has four children, described
her attempt to access domestic assistance:
In order to lessen some of the demands made upon me I
referred myself to Home Care of NSW hoping to get some domestic help. I was
hoping Home Care could assist me even though I am working ... As for the
domestic help, I have been waiting for 12 months now and have heard nothing.[66]
6.70
Assistance with personal care, while principally a service for the care
receiver, also reduces the care load for the carer. A large number of carers
commented on the value to them of this type of support. As with domestic
assistance however, evidence suggests that demand for this type of assistance
exceeds supply and that where available, the level of assistance is inadequate.[67]
6.71
Carers also frequently commented on the need for greater assistance with
home maintenance, including yard maintenance. Some carers indicated that they
were unable to undertake routine home maintenance tasks due to the physical demands
or the need for skills and technical ‘know how’. Often with limited financial
resources, carers indicated that they could not afford to cover the sometimes
significant costs associated with engaging tradesmen.[68]
6.72
From the evidence it appears that in-home assistance and supports are highly
valued by the carer, and particularly by older carers, carers of young children
and adults with high care needs and by those with multiple caring
responsibilities. However, like many of the other services for carers, the
levels of help appear generally inadequate across the nation. To provide carers
with the assistance they need to provide sustainable care the Committee concludes
that the availability and levels of in-home assistance and supports also need
to be increased to more closely meet demand. While the bulk of in-home
assistance funded by the Australian Government is provided by DoHA through the
HACC program, FaHCSIA, as the other major funder of carer services, should also
consider increasing funding for in-home assistance.
Recommendation 34 |
|
That the Minister for Health and Ageing and the Minister for Families, Housing, Community Services and Indigenous Affairs increase funding for in-home assistance for carers in order to more closely meet demand. |
Waiting Lists as a Response to the Lack of Community Care Services
6.74
As noted earlier the evidence to the Inquiry indicates a national
shortage of community based services for carers (and care receivers) generally,
frequently resulting lengthy waiting to access services.[69]
Moreover, some carers suspect that the widespread use of waiting lists to
access services is a de facto mechanism to manage demand where it exceeds
supply.[70] Tellingly, one carer
even reported on the use of a waiting list to get onto a waiting list![71]
Another carer explained how after three years on a waiting list for residential
age care for her elderly mother, she had been advised that a place was
available, one year after her mother had died![72]
6.75
Ms Maria Antonas, a carer in Western Australia, summed up the delay she
experienced in getting assistance from an Extended Aged Care at Home (EACH)
Package by saying:
I get nothing from any care-organisation other than ‘You’re
on the list!!!’ I need help with every aspect of caring. To be put on the
‘EACH’ Waiting List for over nine-months is unjust. [73]
6.76
In practice, waiting lists mean that services are effectively not
available for many in need as noted by Ms Sue Harmer, a carer living in Victoria:
I am submitting to the inquiry because of the complete lack
of services available on the ground. There are services on paper, but if you attempt
to get services for either yourself, as carer, or for person/s with a
disability, you will find that you will get the run around, and or placed on
the waiting list, to which there is a list for everything ...[74]
6.77
Another carer, who wrote about the use of waiting lists and the
difficulties facing carers who attempt to access residential respite services
in Victoria, even on an occasional basis, expressed the dilemma confronting
many carers, in the following terms:
The wait lists in Victoria are a joke. It has taken over two years on a waiting list for us to access occasional residential respite with
Yooralla for Nicholas. Let me put this clearly: the need is huge and the
services paltry. Many people will struggle for years without help.[75]
6.78
As explained by Ms Linda Glover at a hearing in Hobart, service providers
struggling to meet demand are forced to resort to waiting lists:
We do have waiting lists. We have waiting lists in our
aged-care programs. We have waiting lists of people wanting Community Aged Care
Packages of care and a HACC program for school holiday respite for young people
with disabilities.[76]
6.79
The use of waiting lists by over stretched service providers may also
discourage carers from seeking access to services. In its submission, Carers
ACT observed:
Waiting lists are also a disincentive for many Carers.
Anecdotal evidence received by Carers ACT often indicates that carers may be
told there is a waiting list and give up without gaining a place on the list.
Some carers are not told that the waiting list may be prioritized and that they
will never reach a high-enough priority to actually receive services.[77]
6.80
Carers are not only faced with waiting lists to access services, they
are also faced at times with waiting lists to access assessments to determine
eligibility for services. One carer explained the situation she and her sister
were experiencing as they waited to access an aged care assessment to determine
eligibility for residential respite :
Our second difficulty is with the ACAT [Aged Care Assessment
Team] assessment system. Understandably, the assessment must be carried out
each year in order to determine that receivers are receiving their
entitlements, or conversely are not receiving things they are not entitled to.
However, it would appear that the department providing this service is
seriously understaffed/overworked. We had our last assessment in March 2007. I
telephoned to arrange this year's assessment in March or April of this year
[2008], and we still have not been given an appointment ... Without a current ACAT assessment, we are unable to access respite care ...[78]
6.81
To some extent the use of waiting lists is a legitimate mechanism for
prudently managing and controlling supply of a service. However, excessively
long waiting lists are an indicator of unmet demand. The consistent complaints
from carers about ubiquitous and long waiting lists for services is yet more
evidence that support for carers is inadequate.
Options for Reform
6.82
The Committee appreciates that it is neither desirable nor economically
feasible for all care to be provided by the taxpayer. Indeed many carers have
indicated that they do not want to give up their caring role, rather they want
to continue to provide care with adequate support. This chapter has attempted
to demonstrate the shortfall in services for carers from their perspective and
in their own words. On this evidence, carers deserve better support from
governments than they are currently receiving. Moreover, the shortfall in
services is likely to grow as the population in need of assistance grows, and as
government policies and the community continue to expect community living for
care receivers.
6.83
This will challenge all governments to reduce the unmet demand for carer
support services. It will involve more efficient use of existing resources and,
as the Committee has already recommended, increased expenditure on a number of
fronts. There will also be pressures to examine new ways of funding services.
Better Coordination
6.84
Carers have long drawn attention to the lack of coordination between government services, as Ms Cynthia
Perieira, a Victorian carer, expressed colloquially:
At the moment the system that exists in Victoria is a dog’s
breakfast, complex beyond belief and what you access depends on luck, not need
in many instances. ... Stop the buck passing between state and federal
governments. Work together to achieve the above. Carers do not care who does
what. We just want it to happen. [79]
6.85
Australian governments are now collectively acknowledging the need to improve
delivery of community based aged, disability and mental health services. As
mentioned earlier in this report, COAG agreed in October 2008 on the need to
reform the roles and responsibilities between the Commonwealth, States and Territories
for:
n community and
residential care services for aged people;
n community and
residential care for people with disabilities; and
n community care and
support services for people with mental illness.
6.86
COAG has advised that the anticipated reforms promise seamless service
systems to better meet the needs of care receivers and carers on a national
basis.[80] The Committee looks
forward to the outcomes of COAG’s deliberations with interest, particularly if
they do actually lead to greater coordination between the governments.
Innovative Funding Models
6.87
However, many carers and organisations are arguing that better
coordination within the existing system is not enough. One alternative model for
allocating services to carers is via ‘individualised funding’. Supporters of individualised funding (also known as self-managed funding, consumer directed care, self governed
support or self directed support) packages argue that this funding model
provides far greater control to carers and care receivers over the services
they receive.[81]
6.88
There are variations of the individualised funding model in operation in
a number of jurisdictions, both at the state and territory level in Australia and internationally – most notably in Europe, North America and the United Kingdom.[82]
6.89
In essence, a care receiver is allocated a personal budget after their
needs have been assessed. The care receiver can then use that budget to
purchase the support services they want – which could include paying a full
time carer. The principle is to put people at the centre of assessing their own
needs and tailoring support to meet their needs.[83]
6.90
In the United Kingdom, once allocated a budget, a care receiver then
devises a plan indicating how they will spend that money on their support (a
‘support plan’). A care manager has to approve the support plan, but within
broad parameters, a care receiver can determine who, how and what services they
want. Care receivers can take varying degrees of personal responsibility for
devising their support plan and then purchasing the services. Receivers can use
a family member or pay a service broker for assistance or, alternatively,
trusts, legal guardians or carer organisations can act on a funding recipient’s
behalf. [84]
Importantly, regardless of the delegation of decision making, a recipient’s
budget can only be spent on services to support that person. [85]
6.91
A similar funding model based on a voucher rather than cash system is
proposed by Carers WA for carers:
A nationally funded program should be introduced to promote
respite as a health promotion initiative and develop a highly flexible system
via a voucher system which can provide carers with options to choose and design
their own forms of respite.[86]
6.92
The Julia Farr Association sees many potential benefits arising from individualised funding as it offers:
... no greater cost to government and in some instances it
produces savings; much greater satisfaction among people accessing it, so
people and their families tend to report greater satisfaction with the
arrangements because of that sense of control and the sense of being able to
orchestrate something that feels more relevant; and also the evidence suggests
that people are getting more from the arrangement in terms of actual things
that go on in their lives—you know, in terms of material support and also
social inclusion in the life of the wider community.[87]
6.93
However, there are risks with individualised funding. It may place more
responsibility on care receivers and carers than they wish to take on. Thus any
system should allow care receivers to choose the level of self sufficiency they
are comfortable with or allow carers or guardians to choose on their behalf.
There is also the risk that governments may abrogate their responsibilities to
people who have received a support payment. For service providers and agencies it
would also mean a move away from contestable and tender driven funding of
service delivery to an income model driven directly by consumer demand.
6.94
There are degrees of individualised funding built in to some of the
existing aged care and disability programs. For example, funding allocated
through Australian Government Aged Care Packages (CACP, EACH, EACHD) can be
used to purchase services to assist older, frail people with complex care needs.
Furthermore, brokerage funds are available through the Commonwealth Respite and
Carelink Centres to support individual carers.[88] Also, a number of state
and territory governments in Australia use individualised funding in one form
or another and to varying degrees in order to improve the flexibility of
disability services. For example, Disability ACT and Disability Services
Victoria offer forms of ‘Individual Support Packages’ to those with disability[89].
6.95
The various forms and hybrids of individualised funding models are all
attempts to provide care receivers (and indirectly carers) with greater control
over the services they receive. The Committee sees merit in the Australian
Government exploring whether carers should receive cash or vouchers to manage
the services they receive – for example respite and in-home assistance. In
addition to empowering carers and increasing transparency in relation to
expenditure, another possible advantage of the individualised funding model is
that by determining the type and mix of services, demand from carers themselves
can influence service availability, sustainability and mix at the local level.
6.96
One introductory step for individualised funding could be to transfer
into the hands of carers the brokerage funds available through the National
Respite for Carers Program currently provided to carers through the
Commonwealth Respite and Carelink Centres in order that carers could determine
how the money is spent.[90] Through pilot studies,
different models of individualised funding for carers could be tested and any
difficulties identified and ironed out. There may need to be quality assurance
and accountability mechanisms put in place and certainly provisions would be
needed for carers who do not want the added responsibility of managing their
own support budget.
Recommendation 35 |
|
That the Minister for Families, Housing, Community Services
and Indigenous Affairs and the Minister for Health and Ageing undertake pilot
studies to test the potential for the Australian Government’s funding for
carer respite and in-home assistance to be re-allocated directly to carers
through ‘individualised funding programs’ (also known as ‘consumer directed
care’ and ‘self managed funding’). |
6.98
Ultimately individualised funding programs, with appropriate safeguards,
could be used to pool funding across governments for care receivers and carers.
The Need for Improved Data and Forward Planning
6.99
This chapter has used anecdotal, albeit consistent, comments of carers
and carer organisations to illustrate the extent of unmet need for carer
support services. The Committee has sought empirical data from a range of
sources, including from the key Australian Government departments responsible
for supporting carers and care receivers, on the capacity of the community
services sector to meet the demand for services.[91]
While there is data on program clients, the data cannot be used to determine
the total number of carers seeking access to services or identify those carers that
do not use formal services.
6.100
There are significant gaps in the data available on carer numbers,
profile, patterns of service use and needs. For example, the most reliable data
on carers comes from the Australian Bureau of Statistics Survey of Disability,
Ageing and Carers. That survey distinguishes between ‘carers’ and ‘primary
carers’ but only collects detailed data on primary carers. The same survey does
not classify carers under the age of 15 as primary carers and excludes data on
intermittent or short term carers such as those caring for people with a mental
illness.[92]
6.101
The Committee is pleased to note, however, that the Australian Institute
of Health and Welfare is examining the feasibility and utility of a National
Carers Data Repository.[93] The Committee is aware
of the challenges of calculating reliably the number of carers, their profile
and the totality of support services they use. However, without comprehensive,
consistent and integrated data it remains difficult to plan future services and,
more importantly, accurately determine the levels of unmet need.
Recommendation 36 |
|
That the Minister for Families, Housing, Community Services
and Indigenous Affairs and the Minister for Health and Ageing seek agreement
through the Health, Community and Disability Services Ministerial Council to
collect nationally consistent data to more accurately determine the number of
carers, their profile and the level of unmet need for community based carer
support services. |
The Community Care Workforce
6.103
As noted in the submission from Carers Victoria, the development of a
robust and skilled workforce is fundamental to addressing shortfalls in
community care services:
The ability to sustain and expand community care services
remains dependent on the recruitment and retention of an adequate, skilled and
robust workforce. Recruitment and retention issues are apparent in the current
community care service system. This may be attributed, in part, to low pay,
lack of career path, and the isolated nature of the work. The ageing of the
current community care workforce is a further concern. Shortages in the
availability of community care workers will become an increasing problem as the
workforce shrinks and competition for workers increases. It is likely to become
increasingly difficult, and more expensive, for community care providers to
recruit the workforce they need to meet growing demand.[94]
6.104
However, evidence from carers and organisations alike indicates that
there is a chronic shortage of adequately trained and skilled paid support
workers and other community care workers and very high levels of staff
turnover.[95] The Carer Support
Network of South Australia stated:
Carers report that the current system of paid in-home care
workers is unreliable and of low quality. We hear incidents on a regular basis
of the care worker being late or not turning up, not having the skill set
required to provide good care, or not having an appropriate attitude towards
the Care Recipient. Under these circumstances it becomes impossible for the
Carer to be able to depend on reliable care and plan for their future
participation in the workforce.[96]
6.105
Many carers have also indicated that current services relying on paid
support workers are unreliable and the quality of some services is questionable,
as these excerpts from the evidence illustrate.
Mr C Howe and Mrs C Howe –
parents of three daughters, including one with a physical disability
We have trained these workers in
the needs of our daughter and organised a nursing visit to complete a
catheterisation and tube feed while we are out. Whilst this respite service is
so very necessary we are often extremely frustrated at the lack of reliability
of these workers due to illness, studies, or moving on to permanent, better
paid jobs. This frustration is amplified (for us and our children) when we have
to meet and train new support workers on a regular basis. Support workers are
paid a relatively low wage and often use this work as a 'second job' or a way
of earning money while they are at Uni. Support workers are not seen as
'valuable' in our society today and yet for Carers their support worker can be
their one lifeline to a regular break from Caring.[97]
Ms Pamela Bianchi – provides
care for her son with Duchenne Muscular Dystrophy
We have experienced first hand the
incompetent, inexperienced, the uncaring and at times apathetic manner of some
direct [paid] care workers. Each agency must be more accountable for the
persons in its employ. One comment we received indirectly when we did make a
complaint about a [paid] carer that was sent to us was that basically ‘do we
want a service or not?’ Many carers, especially older people do not make
complaints as they fear that they will be abandoned by the service provider or
victimised.[98]
Ms Jayne Lehmann – mother of
three daughters, including one with intellectual and physical disabilities
We have had care workers who have
seen Sarah have a seizure and then will not come back again as they are too
scared. Funny, I thought that was what they were being employed to do - care
for our daughter and her associated problems.
The turnover of [paid] carers is
enormous, which makes it stressful in itself. You already feel like you are
living in a gold fish bowl let alone having to have a steady stream of new
people corning through your home. Most of the carers are not skilled enough to
deliver the care we require and I have to do extra training and emotional
support of them! Some agencies employ a lot of students or people looking to
provide care for a short period of time, before moving onto something else.
This increases the turnover issues.[99]
6.106
To address these issues, carers and organisations have suggested better
training, remuneration, employment conditions, and career progression for paid
support workers and workers in the community care sector.[100]
6.107
It is anticipated that an increase in community care workforce training
places supported through the Australian Government’s Productivity Places
National Partnership with state and territory governments will alleviate
shortages of trained workers to some degree.[101] However, the Committee
considers that an increase in training opportunities will also need to be
complemented by initiatives to encourage greater workforce retention. This is
likely to require greater recognition of the workers in the community care
sector through improved remuneration and employment conditions, and options for
career advancement.
Recommendation 37 |
|
That the Minister for Education, Employment and Workplace
Relations examine options to build capacity in the community care workforce,
particularly initiatives to encourage retention of trained workers in the
sector. |
Availability of Services for Care Receivers
6.109
An analysis of the services available for care receivers, as distinct
from carers, is outside the scope of this report. However, the Committee’s evidence
suggests that services for care receivers are also extremely important for
carers. As one carer commented in the closing remarks of her submission:
... the best way to support carers is to address all needs of
the young and aged with a disability ...[102]
6.110
The Australian Institute on Health and Welfare explains this in the
following terms:
Services for care receivers also assist carers. In other
words, supporting carers involves providing services to address a carer's own
needs but also ensuring that the wider service 'system' works for carers in
relation to the people they assist.[103]
6.111
In addition to targeted services for care receivers, care receivers and consequently
carers are also affected by the availability and access to the ‘wider service
system’ including areas such as transport, housing, employment and education. For
example, many carers have commented on the lack of suitable public or community
transport options to enable care receivers to attend school, day care,
employment, medical or other appointments.[104] Carers themselves are
often required to provide transport to address this shortfall.
6.112
The lack of affordable and suitable housing has also frequently been
raised in evidence. While housing affordability is a national problem,
particularly for people on low incomes, evidence indicates that people with a
disability or mental illness carry a comparatively high risk of becoming
homeless. In particular carers have emphasised that shortages of suitable
public housing have resulted in carers and their families being placed on
lengthy waiting lists for accommodation.[105] The Committee
understands that the Australian Government has implemented a number of major
initiatives that are intended to alleviate shortages of affordable housing and
address issues associated with homelessness.[106]
6.113
In part, the demand for respite services discussed earlier in the
chapter is linked to the shortfall in services for care receivers. For example,
some carers gain a degree of respite if those they care for can obtain employment
or can participate in community access services (predominantly day activity
programs).[107] However, in June 2007,
the Australian Institute of Health and Welfare reported significant levels of
unmet demand for community access services for people with disabilities,
particularly day activity services.[108]
6.114
Under the National Disability Agreement, the Australian Government has
responsibility for employment services for people with a disability. To ensure
public accountability in this regard, data on the labour force participation
rate for people with a disability aged 15-64 years will be published annually
by the COAG Reform Council. In addition, strategies to address the barriers
faced by people with disability and/or mental illness that make it harder for
them to gain and keep work are being developed through the National Mental
Health and Disability Employment Strategy described earlier in the report.[109]
The Committee looks forward to viewing the Strategy when it is released later
in 2009.
6.115
The plight of many older carers is particularly distressing as they struggle
to find adequate support for those for whom they are caring. Many, who have
often spent decades caring for sons and daughters with disabilities, are
worried about the lack of alternative long-term care for their adult children.[110]
A submission from a carer, drawing on her own experience, questioned the
preparedness of governments to deal with the ageing profile of carers:
The government has no idea what is going to hit it in the
next decade. There is an epidemic of children like Nicholas who survived a
traumatic birth and multiple disabilities and will be becoming adults without a
future. Who will look after him when we cannot? In the past such children would
not have survived. Why did the doctors save him when the services that he will
desperately need in the future are not there? ... I would like an answer to
this question in particular.[111]
6.116
The lack of appropriate, alternative accommodation and care options for
care receivers is one of the most pressing concerns for carers.[112]
It leaves carers with little or no choice but to continue caring, often well past
retirement age as explained below:
The one measure that must be put in place with urgency is the
measure that will eventually see us relieved of our caring role. The best
support that a carer can have is to know that theirs is a finite tour of duty and
that one day in the future they will no longer be required to care. This is
because a strategy has been mapped and is being implemented to ensure that
adults with a dependent disability, who are citizens with equal rights in this
great and wealthy nation of ours, will be taken care of by the community. They
will be taken care of, not when their parents have died or are about to do so,
but when their parents have reached retirement age. It seems to me to be
totally inequitable that those parents who have had the most difficult
experience of parenthood are the same ones who may never have a retirement.
Lifelong carers such as myself are desperate to see progress in the provision
of supported accommodation, but we see only rhetoric, debate and promises.[113]
6.117
It is clearly undesirable to have carers forced to continue in their
role because there is no other option. In desperation, carers may resort to refusing
to collect care receivers from short term residential respite care, which is
distressing and undignified for all:
The truth is that most families with adult sons and daughters
who want to transition out of the care role have just one option. That is to
force governments hand by relinquishing the cared for person into respite care
services so that government will make a place available within the supported
accommodation program.[114]
6.118
At the other end of the age scale, carers are also burdened and worried
by the lack of early intervention services for young children with disability
as Ms Faye Galbraith, a mother of two sons, both with ‘a severe, complex
disability’, raised:
I have often said that the most difficult aspect of having
children with a disability is not so much having a child with a disability as
such but having to fight to the point of exhaustion and despair for services
and supports which should be freely offered by Government to parents and carers
in our situation. I have heard many people say this. By no means is life easy
but it is made a whole lot harder by bureaucratic red tape and the simple absence
of funding in the area of disability.[115]
6.119
In Hobart, Ms Sue Hodgson told the Committee that the current
expectation that carers will care until they die or until they become
incapacitated themselves, should be replaced with an expectation, supported by
policies and services and that people with a disability will be able to live
separately from their families once they reach adulthood.[116]
The Committee can only concur.
6.120
Members were reminded again and again during the Inquiry that the needs
of carers and those they care for are inextricably bound. In a more practical
sense, the levels of support for carers are directly affected by the levels of
support for care receivers and vice versa. While the Committee makes
recommendations in this report to improve the lives of carers, the need to
improve support for care receivers is just as pressing.