|
|
[Home] [Help] [Databases] [WorldLII] [Feedback] |
|
Alternative Law Journal |
Sandra McCullough works as, amongst other things, an advocate at
Residential Care Rights in Melbourne.
As is well known,
Australia’s population is ageing. Significantly, it is the ‘old
old’ (people aged 85 years and over) who are increasing in numbers most
rapidly. This age group comprised 8.8% of Australians aged 65 and over, and 1.1%
of the total Australian population in 1995. It is expected to comprise 20% of
the ‘over 65s’ and approximately 4.4% of total Australians in
2051.[1]
The percentage of
older adults requiring residential aged care services is small. Over 90% of the
Australian population aged 60 and over live in the general community and, while
an unknown number of these may receive some form of support or care in their own
homes, only about 7% of people aged over 75 live in nursing homes and about 6%
of people aged over 75 live in aged care
hostels.[2] But again, significantly,
as people age they are statistically more likely to live in a nursing home or
hostel, although the proportion is still not large: 20% of people aged over 85
live in nursing homes; about 14% in hostels.
The proportions may be
small, but older people requiring residential care services (and indeed care
services in their own homes) are, by definition, amongst the most frail and
vulnerable in our society and therefore require special consideration and
special protections if their full rights as citizens are not to be diminished or
ignored. The situation is exacerbated when one considers that the majority of
nursing home residents have some form of cognitive impairment (eg,
Alzheimer’s disease) affecting their legal and decision-making
capacities.
If residents’ rights are ever to be effectively
protected and enforced, it is crucial that aged care service providers,
regulators and others involved in the resolution of complaints recognise the
systemic dynamics at play in residential aged care (and even where aged care
services are provided in the home). First, people entering residential care
enter what is essentially communal living — which may entail some sort of
culture shock. It may mean a decrease in privacy, dignity and individuality,
although ideally it should not. It may entail, for some, a feeling of
‘homelessness’, despair and of being out of control of their own
lives. Staff and providers have a difficult duty, not just in the provision of
quality care, but also in the balancing of individual rights and needs with
those of the wider nursing home or hostel community (particularly where many
residents are cognitively impaired). There is great potential for tensions and
acrimony (but also close and supportive relationships) amongst residents and
between residents and staff.
Second, there is a structural power
imbalance between residents (and their representatives) and the providers
(including staff) of supported residential care. Residents have usually had
neither the real opportunity nor the real capacity to ‘choose’ to
enter residential care generally, or the particular facility, or who provides
particular services for them. They have little or no bargaining power and are
often completely dependent on the continuing good-will of those who do provide
those services and accommodation. They are subjected to what would be
humiliating experiences (for example, toileting and continence management) for
most of us. Most residents, if not all, are frail and may have some minor or
major health problems. Many, especially, in nursing homes, have some form of
dementia. They are therefore very vulnerable to exploitation and abuse, and they
(or their representatives) may fear retaliation if they ‘speak up’
about their concerns about the quality of care provided. Such fear perpetuates
the already existing dependency and vulnerability.
Third, most of the
current residents of hostels and nursing homes are women (because the majority
of older people currently are women). While it is a gross generalisation and not
true of all, many women of the generations currently in care are unused to
speaking up for themselves or to dealing with the finances and legalities which
arise on entry to a facility. They are therefore even more vulnerable to
exploitation and abuse by the unscrupulous.
There is little potential
for equitable and quality outcomes for a resident without some active monitoring
and intervention by regulators.
The federal government has primary
responsibility for regulating and subsidising the provision of hostel and
nursing home care, although State government regulation may also be relevant
(eg, retirement village laws). Since the late 1980s there have been ongoing
reforms initiated by first, the former Labor government and, now, the coalition
government.
Labor’s staged reforms (still in progress when it lost office in 1996)
began in response to the graphic reports of the early and mid 1980s of abuse
(including serious physical abuse and neglect) of frail older adults in some
nursing homes and other institutions.[3] One important component of the reforms was to redirect, as far as
practicable, people away from nursing home care (where many older people had
been inappropriately placed) to home-based or hostel care. Amongst other things,
subsidised ‘community aged care packages’ (for the delivery of
hostel-type care services in people’s own homes) were instituted in
1993.
Reforms to hostels (under the Aged or Disabled Persons Care Act
1954 (Cth)) and to nursing homes (under the National Health Act 1953
(Cth)) included, amongst many other things, recurrent subsidies agreements
between service providers and the relevant federal Minister under which a number
of general and other conditions, including ‘outcome standards’ were
imposed on the providers in return for the funding (based on the levels of
residents’ care needs). (Capital funding was also available to
‘eligible’ facilities.) These ‘outcome standards’
focused on positive and quality care outcomes for residents, rather than on the
‘inputs’ required of staff and management to achieve those outcomes.
Other conditions regulated, for example, the amounts of in-going contributions
payable by residents of hostels (but not allowable in relation to nursing homes)
and the amounts refundable on death or departure; and the amounts of recurrent
weekly fees payable by both hostel and nursing home residents. Sanctions,
including the withdrawal or suspension of funding, were available for
non-compliance with the conditions.
Then, following the Ronalds’
Report,[4] Labor’s reforms
concentrated on attempting to protect and promote the identified rights
and interests of residents of Commonwealth- funded nursing homes and hostels.
Important initiatives included:
| • | the development of a Charter of Residents’ Rights and Responsibilities, which enshrined such things as the right of each resident to full and effective use of their personal, civil, legal and consumer rights, including the right to quality care and freedom of speech, etc; |
| • | the establishment of a Complaints Unit for residents and their representatives in each State office of the relevant Commonwealth Department, which would receive and follow up complaints about nursing home care and accommodation; and |
| • | the establishment and recurrent funding (on a yearly basis) of independent advocacy services in each State and Territory (except New South Wales which already had such a service), which would have the capacity to advocate directly on behalf of individual residents as well as engage in systemic advocacy such as policy work and education. |
Labor’s reforms, while much needed, and certainly an improvement on the
previous situation, nevertheless proved to have some severe problems. Apart from
any concerns about the adequacies of recurrent and particularly capital funding,
two major deficiencies involved first, the inability or unwillingness of the
government to impose effective sanctions on service providers who breached the
funding conditions; and second, as found by an independent evaluation funded by
the Labor government through 1995 and 1996, the lack of capacity of the
Complaints Units to deal adequately with complaints or to resolve disputes
between residents and providers with any
finality.[5] These deficiencies were
significant systemic barriers to the successful enforcement of residents’
statutory and common law rights, and providers’ obligations, in nursing
homes and hostels. Unscrupulous providers (of which there were and still are
some) had no hesitation in taking advantage of these deficiencies by ignoring or
minimising their legal obligations (under not only the relevant aged care
legislation, but also more general laws such as the consumer protection
provisions of the Trade Practices Act 1974 Cth)). They suffered no
effective sanctions for their non-compliance, even when it was brought to the
attention of the appropriate regulators. Residents and their advocates had no
ability to enforce providers’ obligations or their own rights and some
residents continued to suffer detriment, both financially and in terms of the
standard of care and accommodation provided.
Reforms to the aged care sector have continued under the coalition
government. In its first term it passed the Aged Care Act 1997 (Cth),
with subordinate legislation in the form of the Aged Care Principles 1997. The
new legislation, which commenced on 1 October 1997, has brought nursing home and
hostel regulation together in an attempt to create an integrated system of
residential aged care (since compromised by significant policy shifts around
accommodation bonds/charges in nursing homes). Most capital funding has been
withdrawn (despite a review in 1994 which found, amongst other things, that the
level of capital funding of nursing homes was
inadequate[6]) and an increased
‘user pays’ system instituted — thereby supposedly opening up
aged care to increased competition and market forces, considered to be the most
effective way to improve services and ensure quality care (despite the lack of
real choice that is available). Nevertheless, in-going contributions
(‘accommodation bonds’) for hostel (or low-level) care,
‘accommodation charges’ for nursing home (or high-level) care, and
recurrent daily care fees payable by all residents are still regulated.
Importantly, the full range of residents’ rights, including the Charter of Residents’ Rights and Responsibilities, put in place by Labor are also still given legislative force. It is hoped that through a combination of:
| • | a new accreditation system (operated by an independent Aged Care Standards and Accreditation Agency and under which facilities must meet certain care, accommodation and other standards by 1 January 2001 or lose recurrent funding); |
| • | a legislative requirement that all providers have in place a proper internal complaints-handling system; and |
| • | an improved Complaints Resolution Scheme in the Department of Health and Aged Care which has the capacity to make binding determinations, |
| • | some at least of the earlier structural constraints and deficiencies in the imposition of sanctions and the effective resolution of residents’ complaints may be avoided or overcome. |
However, because the
new accreditation system has yet to commence fully, and because the new
complaints system has really only been operating for just over a year and is
still overcoming teething and other problems, it is impossible to say that
residents’ rights and providers’ obligations are now easily and
effectively enforced. The culture of non-compliance that does exist in some
sectors of the aged care industry is not going to change overnight. Significant
barriers to the raising of concerns by residents, as noted above, still do
exist, and there is a great need for on-going training and education of both
providers and complaints resolution staff of the Department in their respective
obligations and the needs of residents. What can be said is that there is
potential for things to improve, but that potential can only be realised
while residents, their representatives and their advocates maintain vigilance in
raising concerns and tenaciously pursuing equitable
outcomes.
References
[1] Australian Bureau of
Statistics, Projections of the Population of Australia, States and Territories:
3220.0, AGPS, Canberra, 1996.
[2]
Australian Institute of Health and Welfare, Australia’s Welfare 1997:
Services and Assistance, AGPS, Canberra, 1997, p
250.
[3] See, for example, McLeay,
L, In a Home or at Home: Accommodation and Home Care for the Aged, Report
from the House of Representatives Standing Committee on Expenditure, AGPS,
Canberra, 1982; and Parliament of the Commonwealth of Australia, Private
Nursing Homes in Australia: Their Conduct, Administration and Ownership,
Report by the Senate Select Committee on Private Hospitals and Nursing Homes,
AGPS, Canberra, 1985.
[4] Ronalds,
C., Residents’ Rights in Nursing Homes and Hostels: Final Report,
Department of Community Services and Health (Cth), AGPS, Canberra,
1989.
[5] Elton, B. and Associates,
Evaluation of the Residential Aged Care Complaints Handling Mechanism,
1996.
[6] Gregory, R., Review of
the Structure of Nursing Home Funding Arrangements, Stage 2, AGPS, Canberra,
1994.