This chapter examines the evidence which the committee received
concerning the difficulties faced by palliative care recipients in accessing
equipment. As the majority of patients with life limiting illnesses desire to
be cared for and pass away in the community or home setting, aids and equipment
are necessary to help achieve that goal.
In the course of the committee's inquiry, much reference was made to the
Home and Community Care (HACC) program and its important role in assisting palliative
Although the HACC program is broader than equipment provision, the evidence the
committee received highlighted the important role equipment plays in supporting
those patients with life limiting illnesses who are not being cared for in a
The HACC program
What is the HACC program?
The Commonwealth HACC Program provides services that support older
people to be more independent at home and in the community. HACC services
- allied health services like podiatry, physiotherapy and speech
domestic assistance, including help with cleaning, washing and
- personal care, such as help with bathing, dressing, grooming and
- social support;
- home maintenance;
- assistance with food preparation in the home;
- delivery of meals;
assessment, client care coordination and case management;
- counselling, information and advocacy services;
centre-based day care; and
- support for carers including respite services.
The eligibility requirements to enable access to the Commonwealth HACC
program require that a person be:
- aged 65 years and over (or 50 and over for Aboriginal and Torres
Strait Islander people); and
at risk of premature or inappropriate admission to long term
residential care; or
- a carer of older Australians eligible for services under the
Commonwealth HACC Program.
The Department of Health and Ageing (DoHA/the department) explained the recent
changes that were made to the HACC program and which took effect from 1 July
From 1 July 2012 the Commonwealth HACC Program will provide
funding for basic community care services which support frail older people and
their carers, who live in the community and whose capacity for independent
living is at risk, or who are at risk of premature or inappropriate admission
to long term residential care. The target population for the Commonwealth HACC
Program are frail older people with functional limitations as a result of
moderate, severe and profound disabilities and the unpaid carers of these frail
older people. Older people are people aged 65 years and over and Aboriginal and
Torres Strait Islander people aged 50 years and over.
DoHA explained that as a result of the changes the responsibility for
the provision of such services to younger people will remain with the state and
The department also informed the committee that the HACC program is not
designed to provide specialist palliative care services although those
receiving HACC services may in fact be palliative care patients:
The Commonwealth HACC Program does not provide specialist
palliative care services as these services continue to be outside the scope of
the Program. However, people who are receiving palliative care services may
also be part of the Commonwealth HACC target population and therefore may be
eligible to receive basic maintenance, support and care services. Commonwealth
HACC services may be provided to people receiving palliative care services as
long as these services are not expected to be provided as part of the general
suite of specialist palliative care services.
People that are in the target population will be assessed to
establish the type and extent of their support needs. Services will be provided
based on this assessment, the priority of need of the person and the capacity
of the service provider to deliver support within existing resources. Support
through the Commonwealth HACC Program is also available to carers of eligible
The committee acknowledges that as the recent changes to HACC only took
effect from 1 July 2012, it is too soon to tell whether or not they have
improved access to services and equipment for the majority of palliative care
recipients. However, stakeholders identified a number of areas which at times
presented barriers or limitations to the HACC and state run equipment programs.
Among these barriers were the need to improve access to equipment, particularly
for younger patients including children, and the need for greater regulation of
Services for Australian Rural and Remote Allied Health (SARRAH)
explained these difficulties succinctly:
In Australia we have a very fragmented and hopeless group of
systems in terms of equipment provision across the states... each state has a
totally different way of providing equipment to support people in palliative
care, in disability and in the acute health system. How people can access
equipment depends on the way the states run those. So there is money provided
by the Commonwealth to support palliative care equipment but that is usually a
separate pool of equipment that is managed by the states or by the disability
sector. It really is a dog's breakfast.
The Victorian Palliative Care Special Interest Group of Occupational
Therapy Australia (OTA) provided the committee with an example of the practical
difficulties patients requiring palliative care have experienced when trying to
access equipment either through the HACC program or other state-funded/based
programs. They explained that in Victoria, hospitals are required to provide
equipment for a 28 day period following a patient's discharge even though the
patient may clearly require equipment for a longer period of time:
Hospitals are required to provide equipment for 28 days post
discharge... Sometimes that works in palliative care because people can get
re-admitted within the 28 days. But it is also dependent very much on service
OTA further explained that access to equipment may also be affected by
the associated hire costs, which are often prohibitive and vary considerably despite
the fact that the costs that would be associated with caring for those patients
in hospital would be many times more.
OTA explained that given the prohibitive costs families often incur when
hiring equipment, some service providers seek to assist at a financial cost to themselves:
...I do not charge any of my patients for any equipment for
palliative care that I have; other hospitals do. I think it is a bit rough
being asked to fork out money when there is enough other stuff going on, but
other services do. And you have to manage that financially as well. We have a
high turnover so it keeps coming back and that is how we manage that. The other
patients are charged. If somebody needs something longer, say, an electric
hoist at home, we will pay for that for the month. We have no budget to pay for
that. We have to but we have no budget. Then the family pick up the cost after
that or sometimes they can access money through unassigned bed funds.
The financial barriers to accessing equipment were also raised by Dr
Jenny Hynson of the Australia and New Zealand Paediatric Palliative Care
Reference Group. Dr Hynson explained:
...we have exactly the same issues [as OTA] with families of
young children trying to obtain equipment. We have state based organisations
and, on the surface, it looks as though you can get equipment but the subsidies
have not changed in 15... to 20 years. The total cost for a motorised wheelchair
might be $12,000 to $15,000, but the contribution from the state might be
$3,000. Then the family has to find the gap. The wheelchair cannot be ordered
until the gap is found. So you find families fundraising and having parties to
try to get the rest of the money. A good case manager will be trying to source
Dr Hynson informed the committee that although the hospital program she
runs has flexible funds attached to it which enable the hospital to pay the gap
for families, the fund was only established after a couple of instances where
children died waiting:
A couple of children died waiting for equipment or for handrails
to be put in their house so they could get around and, by the time the
handrails got there, they had lost the ability to walk. The family was left
with this constant reminder. So a couple of bad things happened that ended up
with us holding that flexible fund. We have to manage that very tightly.
Dr Hynson explained the optimism some have in the introduction of the
National Disability Insurance Scheme; they see it as a way of ensuring such
circumstances do not arise by providing basic services including equipment and
supplies for children suffering life limiting illnesses:
We are hoping that perhaps a disability insurance scheme will
mean that families do not have to fight for basic supplies. The very disabled
kids do not just need a wheelchair, as the OTs were saying; they need a whole
lot of other stuff as well. So it [the cost] adds up.
In addition to long waiting times, the committee also heard of time
limits being imposed on the provision of equipment and services. According to
SARRAH this is occurring in Queensland:
...access to equipment in some instances is capped at three
months but other states have various arrangements. To reinforce what Michael
said, it is all over the shop. There is no standardisation: the provision of
equipment in some states is insufficient, whilst in others there is no cap.
...Just an example: if you drive around Tweed Heads, outside
nearly every second house there is for sale a motor scooter that has been
provided by the government or that has been purchased and that they cannot get
rid of, yet there are all these other people who cannot access these. So it is
really very fragmented.
Dr Ken Baker, Chief Executive Officer of National Disability Services (NDS)
also explained to the committee that access to equipment and aids in rural
areas, due to the scarcity of resources, often requires care providers to take
an 'ad hoc' approach when determining what services can be provided:
...in rural services there is often quite an ad hoc approach to
constructing whatever package of supports is available from wherever it can be
drawn. It is probably not a usual function of HACC to provide this, but in
rural areas organisations often have to be very innovative as to how they put
together support for people.
Dr Baker also spoke of difficulties of palliative care recipients in
group homes accessing equipment under the HACC program in a timely manner:
There has been a longstanding barrier to people in group
homes accessing any HACC support whatsoever. There is a commitment in the
National Disability Agreement to resolve that barrier and perhaps the National
Healthcare Agreement may assist in doing that. This is an example of where
there are a range of HACC services that are available to the people in the
general community that are not available to people in group homes. The
assumption is that people in group homes can get everything they need through
the specialist disability service system. It is not true and it disadvantages
people with disability.
In addition to identifying the need for better access to HACC and
HACC-like programs, concerns were consistently raised that patients who do not
qualify for HACC are falling through the cracks as the state equipment programs
are not adequate.
Eastern Palliative Care (EPC) explained that the inability of patients, particularly
those who do not fall into the aged care criteria, to access HACC services or
equipment, is having a negative impact on the quality of care. EPC explained:
Ms Pedley: The difficulty we have for the under-64s is that
they do not come under the HACC funding, so they are often denied community
based services through local governments.
CHAIR: So they do not qualify for HACC because they do not
have a disability—
Ms Moody: That is right.
CHAIR: or they are under 65. Okay.
Ms Moody: That is a real problem with all of the government
programs: it is a capsule. If you fall outside that capsule, you miss out on
very good support services.
The issue of people under the age of 65 not being able to access HACC
services was raised again by the OTA as a major concern:
My concern...is that there are a lot of people on that
palliative care or non-curative pathway who do not fall into that aged-care
bracket. That is one of the limits. We get a lot of people in their 40s and 50s
who do not meet those ACAT criteria or HACC funding criteria. There are a lot
of ways that that particular age group falls through many gaps...Certainly in
haematology the age groups are huge. I know Olivia's specialty is in adolescent
and young adult care. So there is a raft of people and a lot of age groups that
just miss out altogether if we just go down the aged-care/ACAT pathway.
Ms Deidre Morgan, an occupational therapist and member of OTA, explained
how access to occupational therapy and other services through a HACC like
system for younger people is fundamental. Ms Morgan identified that often
younger palliative patients do not receive rehabilitation funding as they do
not show improvement and therefore separate and additional funding for them is
Often rehab funding is based on improvement. If you are not
improving then you are discharged. The terminology that is often used is that
they have 'failed'. We struggle to get younger people. Yesterday I visited the
home of a 39-year-old who nearly fell down the steps while we were there. His
goal is to go down the steps every night so that he can lie in bed with his two
daughters and read them stories.
...And there is that pressure of funding, so I think we need to
be looking at an alternative funding model for rehab for people at the end of
life. It is not just cancer; it is the chronic neuros, MND, MS, Parkinson's.
These groups of people do not consistently improve and they dip out—they do not
access HACC funding.
OTA identified that in these instances, where these younger palliative
patients cannot access support services in the community environment, for
example through HACC and HACC-like programs, they end up in hospital:
Quite often they will be taking up an acute bed for enormous
amounts of time because there is a big black hole there; they cannot be
supported in the community with their level of decreased capacity.
Professor Jane Phillips, a professor of nursing at Notre Dame University
and St Vincent's Sacred Heart, also explained the importance of immediate
access to HACC or equivalent services – explaining that it is a requirement not
only for the patient with the life-limiting illness but also for the carer
and/or family who require support:
The thing is that for palliative care there cannot be a
waiting list. When we think about HACC services, they are not only for the
patient; equally importantly, they are quite often there to support carers to
be able to manage. I think one of the things that is not necessarily clearly
articulated in a lot of palliative care policy is that people can only stay at
home with an invisible network of people supporting them to remain there. That
is unpaid carers, augmented with paid carers.
Professor Phillips also called for the HACC program to be reviewed as a
matter of priority given that palliative care recipients will not always be
aged care recipients able to access services on account of their age:
Reviewing the way in which HACC is made available to people
with palliative care needs is a really important priority. There is great
variability, as you have no doubt heard as you have travelled around Australia,
in the way in which people can access HACC services. Sometimes for palliative care
patients they are not necessarily available, and that may be because an area
has exceeded its available funding and there is a waiting list.
Given the evidence it received identifying that different approaches to
the administration of equipment and aid programs, the committee sought to
understand whether there were national standards and guidelines that applied to
the administration of the HACC program:
Senator MOORE: So we have got tomes of guidelines—and they
are big; I have seen them, pages and pages—we have the core standard for aged
care, and the Commonwealth now has the ownership of HACC. Are there any
standards within the HACC Program looking at palliative care?
Ms Balmanno: HACC providers, prior to 1 July and continuing
after 1 July, need to comply with the Community Care Common Standards, which
are the same standards that are applied to community care providers under the
Aged Care Act—so for package care providers.
Senator MOORE: So it is a standard two lines in terms of the
standard, and then the big guidelines.
Ms Balmanno: The standards themselves are quite short. The
review process against the standards, in terms of what is considered in
assessing compliance with the standards and whether people are meeting the
standards, is much more involved, which is causing us some challenges with the
transfer of HACC providers to the Commonwealth, because obviously some of them
are quite small services through to quite big services who would be performing
palliative care-type arrangements in the community and things like that. We
also have the very small Meals on Wheels team and others who are operating in a
different way. But it is the same standards that apply.
Is there a better approach?
Is better regulation required?
When providing evidence to the committee, OTA explained that community
service providers and district nurses no longer own equipment due to the
storage problems and maintenance costs. However as the hospitals hold the
equipment it is they that now grapple with these issues, but generally handle
OTA also commented on a new problem – the incorrect prescription of
equipment – and the importance of prescribing the appropriate equipment:
...you do not want to prescribe something that is going to make
somebody more dependent and more physically unable to care for themselves and
be at home for as long as possible.
OTA informed the committee of instances in which case a person who has
had their drivers' license revoked can purchase a motorised scooter:
You can go into an equipment shop and buy a scooter, which is
another dodgy issue when you have had your car licence taken away... Somebody can
have their licence removed, because they are unsafe to drive because they have
a visual defect with hemiparesis, and go to a shop that sells medical health
equipment—and they are popping up everywhere—and be sold a scooter for several
thousand dollars and pop off down the road with a little orange flag. I know
there has been at least one death or even two deaths while crossing four-lane
An equipment library?
In the course of the committee's inquiry, reference was made to the Motor
Neurone Disease (MND) equipment library that operates in Victoria. The committee
sought more information in relation to this program:
MND is obviously a relatively small diagnostic group and it
has a relatively predictable and enormous decline in function from walking to
only being able to... It has an enormous functional decline that is very
predictable. The MND Society has, through fundraising over many years, created
an enormous equipment library with things like hoists, hospital beds, air
The committee heard that the main benefit of the MND library was the
speed in which people could access equipment:
One of the main points about the MND library is that it is
usually very quick to access these things, so you are not waiting like you are
with the main equipment provider, which is SWEP. You can be on a waiting list
for 18 months, which is not much use for someone who might be dead in 12
The committee understood that the MND library was established to
overcome delays patients had been experienced when accessing aids and equipment
through the state government run programs.
The committee is concerned that support and treatment for people with a
life-limiting illness during the later stages of their disease may be difficult
to access, and is also concerned by the inconsistency across jurisdictions in
relation to accessing aids and equipment. The committee was impressed however by
the MND Equipment Library and, while the committee acknowledges that not all
life-limiting illnesses have the same predictability in the decline of a patient's
function, it considers that the implementation of an equipment library on a
national basis should be considered. A national 'equipment library' may limit delays
in both accessing equipment and having equipment collected or removed following
the passing of a palliative care patient.
The committee notes that since 1 July 2012 the Commonwealth HACC Program
is providing funding for basic community care services which support frail
older people and their carers. Those eligible include people aged 65 years and
over (or 50 and over for Aboriginal and Torres Strait Islander people); and
those at risk of premature or inappropriate admission to long term residential
care, or a carer of older Australians eligible for services under the Commonwealth
HACC Program. While it is too soon to tell whether those changes will be
effective, the committee takes the view that the implementation of those
changes should be closely monitored to ensure that the issues which were
identified during the course of the committee's inquiry are addressed. To
ensure that younger people requiring HACC-equivalent services and equipment do
not fall through the gaps, the committee would like to see the state and
territory governments, through COAG, look at establishing a consistent approach
to the provision of equipment and services for those younger people.
Alternatively, the government could consider including 'palliative care' as an
eligibility criteria for access to the HACC program – ie a person with a life
limiting illness would qualify for HACC services and equipment regardless of
The committee was also troubled to hear of the incorrect prescribing of
equipment. Although it did not receive much evidence on this particular point,
the committee suggests that the government examine this issue and whether
current regulatory structures and prescribing guidelines are sufficient to
address these concerns.
The committee recommends that the Council of Australian Governments
examine the viability of introducing a national equipment library for
palliative care patient needs, examining whether such an approach would allow
more efficient and timely provision of available equipment and funds.
To prevent the mis-prescribing of equipment, the committee recommends
that the Australian government investigate current regulation and consider
improving regulation of both private and public palliative care equipment
The committee recommends that the Australian government closely monitor
implementation of the recent changes to the Home and Community Care program to
ensure that the program is meeting the needs of those over 65, and that palliative
care recipients who do not fall into the aged care bracket are receiving
The committee recommends that the Australian government consider
changing the eligibility to Home and Community Care (HACC) to include palliative
care patients or carers of such patients, regardless of their age. The
committee notes that as the HACC program is linked to funding and funding
agreements, the Australian government consider this recommendation in the
context of considering changes to the funding model for palliative care.
The committee recommends that the Australian government analyse and
identify potential gaps in the provision of palliative care and palliative care
funding for people with disabilities, especially in supported accommodation.
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