(a)
“current unmet
need”
PDCN believes that the
evidence showing substantial amounts of unmet
need is beyond dispute. That evidence has
been established and quantified in many
reports and papers over many years. We
earnestly hope that the Standing Committee
and Parliament accept that sufficient data
already exist, providing convincing proof
that “unmet need” is real and
exists at levels which indicate a chronic
problem for people with disabilities,
bordering upon crisis proportions for
many.
According to the
Australian Bureau of Statistics (ABS), people
with disabilities make up the same proportion
of the population in New South Wales as they
do for Australia as a whole, i.e. 19 per cent
of the total.1 The ABS
observes that:
- “Of those
with a disability, 87% (3.2 million)
experienced specific restrictions in core
activities, schooling or
employment”
- “Self care,
mobility and communication are
fundamentally important activities
underlying all aspects of everyday life.
Most people with a disability (78%, or 15%
of the total population) were restricted
in one or more of these core
activities.”
- “Depending
on the level of assistance needed or
difficulty experienced, restriction in
core activities was profound (3% of the
total population), severe (3%), moderate
(4%) or mild (6%)”
Clearly a substantial
proportion of the population of New South
Wales are people with disabilities.
Demographic changes, principally the
increasing number of Australians living to
reach older age, suggest that the proportion
of the population with a disability will
increase also. As the ABS statistical reports
indicate, about one-fifth of the population
encounters restrictions, barriers and/or
limitations in key areas of their lives. The
solution to these problems, in PDCN’s
view, is to accelerate the pace of systemic
change, including the development of new and
reformed service systems designed to promote
and facilitate social inclusion.
It is no less clear
that the need for change and improvement is
overdue. Even if one restricts the focus of
examination to the narrow definition of
‘unmet need’ promulgated by the
Australian Institute of Health and Welfare (a
limitation that PDCN would not endorse) it is
clear that much still needs to be done. As
long ago as July 1996, Professor Anna Yeatman
wrote in “Getting Real: The Final Report
of the Review of the Commonwealth/State
Disability Agreement”2
that she found,
“…critical
and urgent unmet need in virtually all areas
of service provision.
- 135,000 people
with severe and profound handicaps are in
critical need of accommodation,
accommodation support or respite care
services;
- 7,700 people
with severe and profound handicap have a
carer over the age of 65;
- 7,000 carers of
people with severe and profound handicaps
say they can’t access respite;
and
- up to 70,000
people with sever and profound handicaps
may need access to day / recreation
activities.”
PDCN believes that the
situation has worsened since Professor
Yeatman’s report was published. We
believe that a substantial body of written
analysis exists (some published and some
unpublished) to support PDCN’s
observations.
For example, the
Australian Bureau of Statistics wrote
that:
“In 1998, 57%
of the 3.4 million people [in
Australia] with a disability living in
households needed assistance to move around
or go out, shower or dress, prepare meals, do
housework, light property maintenance or
paperwork, or communicate.
Most people in need
of assistance received some help: 64% had
their need fully met, and 32% partly met.
However, there were 4% who felt their needs
were not met at all. … People with
profound or severe restriction who need
assistance were very likely to receive help;
however they were less likely to have their
needs met fully than those with milder
restrictions.”3
PDCN believes that the
ABS analysis underestimates the true picture
of unmet need. Nevertheless, ABS data provide
compelling evidence. More than one-third of
Australians do not have their needs met fully
or at all by current service systems. And the
more profoundly people with disabilities are
the more likely they are to have unfulfilled
service needs.
Professor
Yeatman’s report and the ABS statistics
add to the body of irrefutable evidence
showing that people with disabilities
experience substantial levels of ‘unmet
need’ in many aspects of their lives,
including social welfare services. It is of
debatable worth, however, to limit the field
of inquiry to the very narrow base of issues
identified as ‘unmet need’ within
the CSDA. PDCN is not alone in such a
view.
The New South Wales
Government led by Premier Carr, for example,
asserted in 1996 that
“Through
promoting greater equity, rights, access and
participation, NSW will become a genuinely
richer
society.”4
In relation to
addressing the needs of people with
disabilities in particular Premier
Carr’s Government resolved:
“ to have a
whole of government approach [to people
with disabilities] with, as a major
objective, the co-ordination of programs
across government
agencies.”5
And
“to ensure that
each person with a disability is supported as
an individual in all policies, by all
agencies and all
programs”6
PDCN urges the New
South Wales Government, through the Inquiry
of the Standing Committee on Social Issues,
to re-commit itself to the objective of
“promoting greater equity, rights,
access and participation”. We agree with
the Government’s observation in 1996
(which appears to have slipped to a very low
position on the ‘to do list’ of
policy implementation) that social investment
- driven by a “whole government
approach” - can lead to a
“genuinely richer
society”.
Premier Carr’s
Government clearly agrees, in policy terms,
with PDCN’s view that social investment
to facilitate the participation of people
with disabilities enriches the whole of New
South Wales’ society, not just those
individuals being supported. The goal of
social inclusion through which social
diversity is celebrated appears to have
informed the NSW Government’s own words,
which commit its “whole of government
approach” to a policy framework for
people with disabilities that
seeks:
“A society in
which individuals with disabilities and their
carers live as citizens with optimum quality
of life, independence and
participation.”7
PDCN believes that the
Inquiry of the Standing Committee on Social
Issues offers the Government a defining
moment to re-commit itself to policies,
infrastructure developments, funding
arrangements, service systems and verifiable
actions that create, promote and sustain a
community that excludes no-one. We believe,
therefore, that the debate about how best to
eradicate ‘unmet need’ must be
informed by and located within the overall
context of the experiences and circumstances
of people with disabilities today. There is
much to consider.
People with
disabilities need …
a. Economic
independence and security.
The overwhelming
majority of people with disabilities are not
in paid employment. 8% of all people with
disabilities are under 15 years of age.8 34%
of people with disabilities are beyond
working age.9 And in the
population of people with disabilities of
working age, 47% are not in
employment.10
People with
disabilities are much more likely to be
outside the Labour Force than are Australians
in general. According to the ABS, more than
80% of the population of working age with no
disability are Labour Force participants. For
all people with disabilities of working age,
however, the participation rate is only 53%.
And the more profoundly disabled a person is,
the more likely it is that the individual
will be excluded from the Labour Force. 60%
of people with a “severe core activity
restriction” do not participate in the
Labour Force. For people with “profound
core activity restriction” the exclusion
rate is an astonishing 80%.
In total, at least 70%
of all people with disabilities receive no
income of any amount from
employment.
PDCN recognises that
income support is principally a matter for
the Federal Government to act upon. Like many
other organisations in the disability sector,
PDCN has submitted a detailed response to the
deeply troubling Discussion Paper on
so-called welfare dependency issued by
Senator Newman. However, as the Legislative
Council considers the question of ‘unmet
need’ it is essential that its
deliberations acknowledge and seek to respond
to the realities of the economic
circumstances of people with disabilities.
Ample evidence exists to show that,
generally, people with disabilities of all
ages live on incomes that are below the state
and national averages. At the same time, we
believe, people with disabilities face higher
costs of living than the population in
general.
The combination of
lower incomes and higher expenditure patterns
places people with disabilities in seriously
disadvantaged economic and social
circumstances. Financial barriers created by
the extra costs of living of people with
disabilities re-enforce social trends and
systemic inadequacies, which further exclude
people with disabilities. It is critically
important that the development of new or
existing services for people with
disabilities are designed with service user
participation to break down, rather than
perpetuate, the social isolation and
marginalisation common to many people on low
incomes.
PDCN RECOMMENDATION
1
The NSW Government
should accept that people with disabilities
generally live on below average incomes and
that there are extra costs of living with a
disability created by systemic barriers and
discrimination. All Government programs
should, therefore, take account of the
economic disadvantages experienced by people
with disabilities. Eligibility criteria,
means tests and charging policies should be
revised to better fit the true financial
circumstances of people with
disabilities.
b. An accessible
environment.
Any review or inquiry
into the ‘unmet need’ of people
with disabilities, which seeks to consider
how service systems can be improved, must
help to encourage change in the acutely
hostile built environment in which
‘normal’, ‘mainstream’ or
‘day to day’ activities occur. High
on the list of the problems of ‘unmet
need’ is the continuing denial of
citizens’ full access rights in a built
environment that discriminates against people
with disabilities.
Historically, one of
the responses of service systems and funding
regimes to the reality of inaccessible
buildings and services used by the community
as a whole has been to develop (then extend
or modify) segregated, so-called specialist
services and buildings. This has been a
costly and deeply flawed strategy.
PDCN is deeply
committed to the creation of a barrier-free
built environment. The Standing Committee on
Social Issues should unambiguously and
strongly assert recommendations that are
intended to eradicate expenditure on
segregated facilities. Services and service
support should allow people with disabilities
genuine choice. The failures of design and
construction – still too common
throughout New South Wales - should not be
tolerated in the civilised society we believe
ourselves to be. People with disabilities
should have no more or less choice than other
Australians about where they go, what they
do, and with whom they do whatever it is that
passes for ‘normal’ activity in our
complex, multi-faceted modern world, where
people from many different backgrounds and
experiences seek to exercise rights to
independence and participation.
PDCN RECOMMENDATION
2
All new-build
developments and rehabilitation projects
should be required to comply with the highest
possible standards of barrier-free design and
construction. No building should be
‘signed-off’ as fit for public use
unless and until the developer and/or owner
can verify that access for all has been
included and meets the standards
required.
PDCN RECOMMENDATION
3
No money raised by
Government from any source should be
allocated to any development or
rehabilitation project that does not
guarantee access for all as integral feature
of the design, construction and use of a
building.
c. An accessible
and integrated system of public
transport
It is beyond dispute
that New South Wales needs a fully accessible
public transport system if the social
inclusion of people with disabilities is to
become a reality. The pressing urgency for
improvement cannot be overstated.
Not one component of
the public transport network is yet fully
accessible to all people in New South Wales.
Although there have been important and
welcome initiatives taken by publicly owned
or regulated private sector providers, the
pace of change remains too slow. By
comparison, too many private sector transport
providers have not moved at all to eliminate
discrimination.
It is regrettably clear
that transport operators and planners have
decided on access implementation cycles of
between 10 and 20 years duration. Most
Australians would regard a half-hour delay in
the arrival of a bus, train, taxi or ferry to
be excessive, bordering on the inexcusable.
Some Australians - those of us with mobility
impairments - are being told it is reasonable
to wait up to 1, 2, 10 or 20 years before we
can board the next ferry, taxi, train or
bus.
There can be little
doubt that there is substantial ‘unmet
need’ in relation to accessible
transport. In almost every survey and/or
discussion about the general
‘problems’, issues of concern and
anxieties of people with disabilities,
transport comes high on the list. The lack of
accessible transport is often cited as the
biggest problem people face because mobility
is a key requirement of participation in the
activities of the communities in which we
live, work, take leisure and use
services.
PDCN RECOMMENDATION
4
All transport
systems should be made fully accessible at
the earliest opportunity to meet the needs of
all people in Australia. The NSW Government
should invest $5 million in an incentive fund
to accelerate the pace of development of
accessible buses.
PDCN RECOMMENDATION
5
The RTA (Public
Transport Improvements Initiatives Program)
should allocate $5 million of capital funds
over the next three years to assist local
government to improve access in the physical
environment to and for low-floor
buses.
PDCN RECOMMENDATION
6
All vehicles used in
any transport service or system supported by
NSW Government policy, action or funding must
be designed and operated to promote all
people’s participation in
‘mainstream’ activities,
organisations and community
life.
PDCN RECOMMENDATION
7
An additional $30
million should be invested by the NSW
Government in an accelerated program of
improvements to rail stations as part of
CityRails’s Easy Access
scheme.
PDCN RECOMMENDATION
8
$10 million should
be added to the recurrent spending budget of
the Taxi Transport Subsidy Scheme to increase
the subsidy limit from 50% of the metered
fare to 75%.
PDCN RECOMMENDATION
9
No public money or
services should be allocated to purchase or
lease vehicles or operate services that are
inaccessible and/or cannot meet the transport
needs of all potential service
users.
d. An accessible
home of one’s own
Most people with
disabilities live in their own homes. This
has always been the case and always will be.
With the adoption of ‘devolution’
policies by the NSW Government it is certain
that the proportion of people with
disabilities living in long-stay,
institutional care will reduce even
further.
PDCN believes that
accessible housing is one of the foundation
stones of independent living. By designing
and building houses to meet the needs of all
people, we can create a housing stock that is
flexible and capable of adaptation to the
changing circumstances of occupants over many
years. By ‘factoring-in’
accessibility from the outset, financial
resources will be saved over the longer-term
life of a property by minimising the need for
and cost of access modifications in years to
come.
Sadly, only a very
small proportion of houses in New South Wales
have been built to Australian Standard 4299,
the fundamental requirement for barrier-free
design. The shortage of accessible
accommodation creates unnecessary and
avoidable costs and demands on social welfare
support systems (both formal and
informal).
By failing to meet the
need for ‘life time’ housing design
that is barrier-free, we distort the demands
made by people with disabilities on service
budgets. For example: By designing a kitchen
to meet barrier-free standards it could
become possible for a wheelchair user to no
longer rely on paid or unpaid support around
the home. Such intervention is often made
necessary solely because a sink, cooker or
washing machine has been designed and located
without consideration of the access needs of
all. In such a scenario, barrier-free design
becomes a ‘win-win-win’ concept.
The wheelchair user maximises her or his
independence.The inappropriately deployed,
paid or unpaid support can be targeted to
other people with needs or (in the case of
unpaid ‘carers’) freed from a task
that ought not to be theirs. Precious tax
dollars can be ‘re-provisioned’ to
people with real support needs that have not
been created artificially by housing design
failures.
The Standing Committee
on Social Issues should recommend that NSW
regulatory bodies and planning agencies
insist that all new housing developments be
built to the highest possible standards of
barrier-free design. Such compliance should
be required because
- Barrier-free design
is the only long-term solution to
people’s unmet need for accessible
housing.
- All people will
need accessible housing at some stage of
their lives, particularly in the
circumstances of a trend towards
substantially more people living to older
ages.
- Barrier-free design
is cost-effective and saves money in the
long term.
PDCN RECOMMENDATION
10
All new housing
should be built to the highest possible
standards of barrier-free design and never to
less than the requirements of Australian
Standard 4299.
e. Aids &
equipment that support
independence
The Review of the
Program of Appliances for People with
disabilities 11 (PADP)
written by Carla Cranny & Associates
described in comprehensive detail and depth
the operation of this crucial scheme in NSW.
The contents of that report and the history
of the difficulties surrounding its release
to the public are well known and a matter of
record. PDCN urges members of the Standing
Committee on Social Issues to re-familiarise
themselves with the findings and
recommendations of the Cranny
Report.
PDCN believes that
people with physical disabilities must be
provided with the essential aids and
equipment they need to achieve the quality
and standard of living that make it possible
for us to participate as independent citizens
in our communities. It is crucial, therefore,
that the state-wide Advisory Committee on
PADP established after the publication of the
Cranny Report be encouraged and supported to
conclude its deliberations as swiftly as
possible.
As we noted earlier in
this submission, most people with
disabilities derive no income from employment
and many people live on lower than average
incomes. However, the extra costs of living
that most people with disability encounter
mean that the purchase costs of aids and
equipment can create financial difficulties,
even for people whose income exceeds the
levels at which disability and health related
benefits and pensions are set by Government.
Many people with disabilities, including
people in employment, cannot afford to buy
wheelchairs, special seating, hoists,
prostheses and other aids necessary for their
independent daily living. In an escalating
spiral of problems faced by people with
disabilities, the need to purchase essential
items adds to the costs of living with a
disability.
PDCN believes that the
PADP budget remains under-funded, in the
light of the evidence of unmet need revealed
by the Cranny Associates Report. The
experiences of people with a physical
disability who contact PDCN about the aids
and equipment program confirm the findings of
the Cranny Report, which show that PADP
services are not provided with consistency
across the whole of New South Wales. We
believe also that the assessment processes
can and do create problems for people. We
agree with authors of The Equipment Study
that there need to be changes made to the
method and systems of assessment.
Given our earlier
observations about the low incomes and extra
costs common to many people with
disabilities, PDCN believes that the income
threshold above which applicants receive no
support must be raised substantially. PDCN
knows from the personal experience of many
people whose needs are not being met that the
current levels of means testing cut-off do
not accurately reflect the real costs of
living with a disability. The knowledge we
have gained from the reports from individuals
with physical disabilities experiencing
difficulties meeting the costs of aids &
equipment has been confirmed by surveys of
need, such as that conducted by the
Australian Quadriplegic
Association.
PDCN RECOMMENDATION
11
Substantial
increases in the funds available to PADP are
required. Such is the scale of unmet need
that we believe the PADP budget should be
increased from $13 million to $26 million per
annum.
PDCN RECOMMENDATION
12
Eligibility for
support through PADP should be extended to
people with disabilities on income levels up
to and including the median Australian
income.
PDCN RECOMMENDATION
13
Oxygen and oxygen
related expenditure should be held in its own
program, separated from a revised, fully
funded PADP.
PDCN RECOMMENDATION
14
The assessment and
service delivery processes should be
streamlined to provide an efficient,
consistent, and fair PADP system across the
State.
PDCN RECOMMENDATION
15
PADP management
processes should be appraised and reformed to
reduce waiting times and optimise the use of
tax dollars.
f. Personal
Assistance to Support Independent
Living
It is not only in the
area of aids and equipment for independent
living that people with disabilities have
unmet needs. Human support to provide
personal assistance is no less vital to many
people.
PDCN believes that
people with disabilities must be enabled to
choose from a diverse and broad range of
person-centred options of personal assistance
and support for independent living. The
purpose of such support systems and services
should be to help people realise their
legitimate aspirations to control their
personal living arrangements and facilitate
participation in community life.
Attendant or personal
assistance is an essential support service
for many people with disabilities,
particularly those with more profound and/or
complex impairments. Such assistance makes it
possible for people with high levels of
support requirements to control the
performing of everyday tasks that most people
take for granted such as taking a shower,
dressing or preparing a meal.
Attendant or personal
assistance service systems can make it
possible for people to live as independently
as anyone else in the community, to exercise
the fundamental rights of citizenship and to
make the same set of lifestyle choices as
their peers who have no disability. To do so,
personal assistance service systems need to
be adequately funded, sensitively managed
and, at the point of delivery, under the
control of the person receiving the
support.
Personal or attendant
assistance to people with disabilities is
provided in several ways. PDCN wishes to
comment on 4 methods in particular. We
believe it to be critically important that
the Standing Committee on Social
Issues acknowledge the true extent and
nature of the unmet need in these
areas.
We implore the
Committee to recommend substantial changes to
the status quo, including significant
increases to specific budgets. New funding
arrangements should be introduced by
transferring funds from areas of current
expenditure that perpetuate institutional
living or other service distortions that do
not contribute to genuine independence and
participation. Such re-provisioning of
existing funds will require transitional
funding to be available to make possible a
smooth period of transfer of budgets from
older and inappropriate forms of support to
newer and more responsive systems. If and
where necessary, funds should be increased to
ensure that people making the transition from
institutional living experience no reduction
in the quality of support
received.
‘The
informal network of care’, which
usually means family members or friends
providing unpaid support to people they know
personally.
PDCN believes that one the ultimate goals of
developing appropriate, fully funded service
systems that respond appropriately to need is
to release people with disabilities and
informal ‘carers’ from the
emotional trap of ‘informal care’.
The unpaid, unregulated personal assistance
provided to people with disabilities by their
parents, children, partners, other relatives
and/or friends represents a massive subsidy
of Government by taxpayers who happen by the
accidents of circumstance, birth or personal
relationship to know and care for ‘loved
ones’. The support that ‘the
informal network of care’ provides to
people with disabilities hides a mountain of
unmet need.
We believe that people with disabilities,
their families and friends should be
liberated from the emotional trap of
providing ‘informal care’. People
with disabilities, family members and friends
ought to be able to conduct their personal
relationships (for good or ill) without the
distorting consequences of receiving or
providing ‘care’ that is truly the
responsibility of Government agencies to make
available from tax revenues.
The Home Care
Service of New South Wales, funded
under the Home And Community Care Program
(HACC) and which is the largest single
provider of personal assistance and support
in the home for people with disabilities.
PDCN endorses the view of the Council of
Social Service of New South Wales (NCOSS)
that, “there is strong community
support for the goals of the HACC Program
which aim to provide support services …
at home and in the community, thereby
maintaining and improving
[people’s] independence and
preventing inappropriate entry to long-term
residential
care”12
We agree with NCOSS that
“The need for HACC services has
always been immense, and this need continues
to grow at a far greater rate than the supply
of
services.”13
PDCN believes that
considerable personal and research evidence
exists that has established the key concerns
of unmet need in relation to HACC funded
home-care services. We believe
that:
- Insufficient funds
have been allocated over the last decade
and more to allow the provision of service
to keep pace with legitimate demand and
demonstrable unmet need.
- Waiting lists have
been created as a means of rationing
access to service.
- The fact of waiting
lists has become a managerial tool used to
justify periodic closure of application
and assessment processes.
- HACC funded
services are not provided consistently and
equitably across New South
Wales.
- Pressure has been
created in assessment and periodic review
processes to reduce the number of hours of
support available to current users and to
limit the number of hours available to new
users. Budget constraints rather than
assessed need for service have become the
determining factor of the upper limits on
support to be offered.
PDCN welcomes the
introduction of a centralised and revised
assessment and referral service for HACC
funded ‘home care’ provided by the
Home Care Service of New South Wales. We
believe that the separation of assessment of
need from the delivery of service has the
potential to bring benefits and improvements
for service users. We are certain, however,
that all the potential benefits will be lost
over time if the new arrangements become yet
another mechanism for ‘gate
keepers’ to ration supply and regulate
demand from service users.
PDCN RECOMMENDATION
16
The budget for the
HACC Program should be increased
substantially from tax revenues to begin to
address the chronic funding gap that has been
growing since 1985.
The “Virtual
Pool”
The “virtual
pool” was established to provide a
protected funding source across the state for
people with disabilities with high levels of
support needs and/or complex requirements.
Eligibility for funding from the virtual pool
is restricted to people requiring service
support for 60 hours or more per
month.
The funding available
in the virtual pool for service provision is
insufficient. There is substantial unmet
need.
- The lack of
available funds mean that some people who
would be and should be supported to live
independently in their own homes are
living inappropriately in long stay
institutions, including hospitals.
Hospital stays represent the highest cost
form of supported living funded out of
taxpayers’ money. Apart from the
personal and human costs borne by the
people living in such inappropriate
settings the cost to the community as a
whole is enormous. Paying for people to
live in hospital because there are
insufficient funds in the virtual pool
wastes tax revenues, ties up much needed
hospital resources and denies people with
disabilities the fundamental right of
living independently.
- Service users
funded from the virtual pool are unwitting
competitors in a ‘grab for
cash’. Pressures created by
inadequate funding result in some users
being ‘knocked out’ of service
because of the requirements of people with
more complex or substantial support
needs.
PDCN RECOMMENDATION
17
The NSW Government
should invest an additional $1.4 million in
the recurrent spending budget available to
the Virtual Pool.
The Attendant
Care Program
A small (but important)
group of people with physical disabilities
receives support to live independently
through the Attendant Care Program. Priority
has been given to younger people who have
been inappropriately placed in institutions
or individuals in danger of
institutionalisation.
PDCN reminds the
Standing Committee on Social issues that ADD
has already admitted that that there
currently exists a backlog of 150 people
waiting for support through the program. We
agree with current estimates that new funding
needs to be committed to meet the unmet need
of an additional 100 people.
PDCN RECOMMENDATION
18
The NSW Government
should honour its promise in previous budgets
that 100 new places would be funded at the
rate of 25 per year.
PDCN RECOMMENDATION
19
The Government
should accelerate its timetable and introduce
new funds now to meet the total estimate of
250 people whose need for support from the
Attendant Care Program is currently
unmet.
g. Adequate therapy
services, particularly for
children
The provision and
delivery of therapy services to school-aged
children are beset by substantial, sometimes
overwhelming problems. In summary, PDCN
believes these problems to be:
- long waiting
lists
- lack of consistency
of service across the State
- service gaps,
particularly where children are not
‘attached’ to a hospital, an
existing service provider or the
Department of Community Services
(DoCS).
PDCN is additionally
concerned that a policy of developing
“consultative services” is clearly
emerging, which is being increasingly
implemented to de-professionalise therapy for
children. We are far from convinced that this
cascade approach to therapy for children,
wherein trained therapists pass on elements
of their skills and training to non-therapy
professionals in other fields or to parents
and family members, is adequate as a
long-term strategy. PDCN is not wholly
opposed to the introduction of some
consultative arrangements. These should be
seen as additions to the current arrangement
rather than substitutes for adequate
support.
We are deeply concerned
that ill-conceived stopgap measures and
inadequate levels of funding will further
undermine the government’s commitment to
therapy.
It has been clearly
established through public consultations on
therapy services (including PDCN consultation
meetings) that parents of children with
disabilities are deeply concerned about the
lack of provision available.
We believe that two
worrying trends are developing. They combine,
we believe, in ways that undermine the
viability of Government funded therapy
services and distort our understanding of the
nature and extent of the need for therapy
services:
Parents with large
enough discretionary incomes, or who
sacrifice other expenditure in the family
budget, are seeking private sector
solutions.
In such circumstances,
parents are paying twice for services that
ought to be provided through the distribution
of tax revenue.
- Parents who do not
have large enough discretionary incomes to
buy in private services are receiving no
support. Their children are being denied
therapy services at crucial stages of
development. In these circumstances,
parents are paying with their taxes for
services that their children never
receive.
In both of the above
circumstances children are losing out. An
additional problem flowing from systemic
failure today to provide adequate therapy
service provision is that people will be
denied the opportunity to maximise their
independence in adult life. The effects on
the individuals concerned will be
substantial, adverse and all the more
disturbing because they will have been
preventable. The effects on New South Wales
as a whole will be to unnecessarily inflate
budgets in future years, to perpetuate
service system distortions and to complicate
planning priorities for the years ahead by
failing to recognise the human, personal,
economic and systemic value to everyone
involved of early intervention.
(b)
“the adequacy of the Government’s
response to unmet need to
date”
It should be clear from
our comments in the previous section that
PDCN believes that the Government’s
response to the unmet needs of people with
disabilities has been woefully inadequate. We
believe that the failures have been evident
in both the philosophical approach that
underpins Government policy and in the
provision of funding, which at current levels
is dramatically lower than
required.
We believe that
Government should show itself through action
as well as policy statement to be
wholeheartedly committed to promoting the
participation of people with disabilities in
New South Wales’ society. In the short
term we acknowledge that realising such a
goal will require the expenditure of
re-provisioned and new tax dollars. PDCN is
convinced, however, that the longer-term
social, economic, cultural and personal
benefits to the whole of New South Wales will
be enormous. We are certain that social
investment made today to support and enhance
the independence of people with disabilities
will be returned with economic profit and
social, cultural and democratic gains for the
whole of New South Wales’ society in the
future.
With specific reference
to the questions posed in the Terms of
Reference document Part 3 (b) (i) & (ii),
PDCN urges the Standing Committee on Social
Issues to accept:
the recommendations for
increased funding that we propose in the
previous section.
Additionally, PDCN
urges the Inquiry to accept:
PDCN RECOMMENDATION
20
The NSW Government
should accept the analysis on of the
Disability Safeguards Coalition (of which
PDCN is a member) that an additional $235.5
million expenditure is required over the next
5 years to meet known unmet
needs.
PDCN RECOMMENDATION
21
That the Government
should establish an accurate and reliable
data set for planning purposes which reflects
the reality of the numbers and circumstances
of people with disabilities across New South
Wales. Speaking at a meeting for peak
organisations on service planning models
(3/02/00) the Director of Strategic Policy
& Planning of the Ageing & Disability
Department acknowledged that no credible
detailed data set exists for the population
of people with disabilities.
In the absence of
reliable data, we do not see how Government
planning can be based on sound
foundations.
(c)
“the need and level of provision for
respite care”
If the Standing
Committee on Social Affairs wishes to do no
more than consider the problems with and
failures of the current dominant model of
providing ‘respite care’, there is
little need to read beyond the Community
Services Commission’s publication
“Respite Care: A System In Crisis”.
PDCN believes that two of the most telling
findings of that report give clear proof of
the inadequacies of current service provision
and the dominant service model. The Community
Services Commission found that:
- “of the 363
designated respite beds about 40% were not
used for respite but instead were
continuously occupied by 149 consumers who
had been there, on average, for 3.3 years
each (and in one case for 20.5
years);
- while at least
4,500 people required but could not get a
respite service, the high rate of access
by some (343 consumers using on average
149 days respite each a year) meant that a
further 40% of beds were permanently tied
up by this one
group;”14
The Commission’s
report provides dramatic evidence of unmet
need.
PDCN believes, however,
that the Standing Committee on Social Issues
needs to look beyond the appalling
statistical evidence of unmet need presented
so well by the Commission. We believe that
the scale and nature of the problems revealed
by the report are inherent in a deeply flawed
model of providing short-term support and
accommodation, commonly known as
‘respite care’.
The traditional and
still most common model of ‘respite
care’ was intended by its proponents and
advocates to provide short-term relief,
principally to unpaid ‘carers’
(usually family members), from the
‘burdens’ of caring for people with
disabilities.
The model has a number
of flaws that are exposed by the systemic
failures identified in the Community Services
Commission report. PDCN believes these
failures of the traditional model of
‘respite care’ include:
- Most commonly, the
disabled person is removed from her or his
home and family setting in a unique act of
relocating one permanent resident to solve
the problems of another permanent
resident.
- The need for
‘respite’ is predicated on a
deeply flawed status quo. It is assumed
that the principal provider of support to
people with disabilities will be or is a
member of the informal network of care,
usually a family member or friend
providing unpaid, unregulated support on a
permanent or long-term basis.
- ‘Respite
care’ services get used as
inappropriate and inadequate substitute
providers of long-term support to people
with disabilities. The Commission’s
study reported that 40% of the designated
short stay places were occupied by people
who had stayed for more than three years
on average.
The perceived
“crisis” in the traditional model
of providing ‘respite care’ or
short-stay support to people with
disabilities is more accurately described as
a symptom of the much wider, deeper and more
complex problems created by the lack of
adequate funding for independent living
accommodation and support services. PDCN
believes that it would be unwise to commit
additional taxpayers’ money to more
traditional ‘respite care’
services.
PDCN RECOMMENDATION
22
Adequately funded
support services should be provided to people
with disabilities in their own homes. People
with disabilities should not be required to
leave home because a parent, child, other
family member, partner or friend is exhausted
by or cannot cope with caring tasks that
ought not to be their responsibility in the
first place.
PDCN RECOMMENDATION
23
Money that might be
spent on the construction, equipping,
maintenance, management, staffing and
administration of new or refurbished
facilities to provide traditional
‘respite care’ services should be
re-provisioned to add to the available range
of community-based, person-centred
independent living services intended to
support and maintain people with disabilities
in their own homes.
(d)
“the availability and distribution of
supported accommodation, respite care and
other disability services for people in rural
and remote communities, needs of people with
disabilities and their families in rural and
remote areas, and the need for government to
make particular provision for their
needs.”
PDCN believes that
people living in rural and remote communities
experience additional difficulties in having
their needs met. We believe that the reality
of the inequity and inconsistency of service
provision across New South Wales has been
well documented and clearly established by
evidence over many years.
PDCN believes that the
Government should acknowledge what it already
knows: that people in rural and remote
communities receive even less comprehensive
attention to their needs than people in the
urban centres of New South Wales. PDCN
believes that taxpayers (by which we mean
everyone) should receive the same levels of
service wherever they live in the state in
which their taxes are paid.
We believe that
Government should take a proactive and
leading role to promote greater equity,
rights, access and participation throughout
New South Wales so that the State and its
people can live in a genuinely richer
society. We believe that Government should
stick with that commitment made in the
Premier’s Social Justice Directions
Statement. Like the Government, we believe
that social justice is not limited to urban
centres. Government’s role and action
must be understood and observable in all
parts of New South Wales.
(e)
“the security of ongoing funding
arrangements for the non-government
sector”
PDCN understand why the
Standing Committee on Social Issues has asked
this question. Respectfully, however, we wish
to submit that the focus of this part of the
Inquiry’s Terms of Reference misses the
point.
The key question as far
as PDCN is concerned must be how secure, or
otherwise, are people with disabilities in
the belief that they can act as independent
citizens?
We believe that people
with disabilities are neither as secure in
their roles as citizens in their own right
nor as secure in those roles as people who
are not disabled by a society that
discriminates against people with
disabilities.
One of the goals of
Government policy should be to create the
circumstances in which people with
disabilities have no greater insecurities
than do others. Government must accept that
it has a role to play in supporting people
with disabilities to establish secure rights
to service provision within an
anti-discriminatory framework. In such
circumstances it becomes necessary that
Government ensures that any and all providers
of services – government and
non-government, specialist and generic –
are adequately funded, well enough organised
and capable of delivering sufficiently high
standards to support people with disabilities
with in a secure, reliable, ongoing,
person-centred manner.
In short, therefore,
the Government should be concerned with the
security of people rather than organisations
per se. Government and non-Government sector
providers should be supported and funded by
taxpayers’ money only in circumstances
in which either can show demonstrable proof
that their philosophies, principles,
policies, services and actions are wholly
committed to promoting the greater security
of people with disabilities as independent,
participative citizens with equal
rights.
(f)
“the desirability or otherwise of a
continuing role for Government in the direct
provision of services for people with a
disability.”
It is both necessary
and desirable that Government has a
continuing role in direct provision of
services. In a civilised society, one that is
prepared to meet the challenges and
priorities at the start of the 21st Century,
this question ought to be beyond dispute.
Anyone that suggests governments in the
modern world have no role in direct service
provision is a fool, incapable of learning
anything from the failures of previous
attempts by various governments around the
globe to retreat from engagement with the
needs of disadvantaged people.
(g)
“the adequacy of administrative
arrangements between the Ageing &
Disability Department and the Department of
Community Services inrelation to the
disability services provided by the
Department of community
Services.”
It is not easy for a
small, non-government agency such as PDCN to
comment in detail on the relationships and
arrangements between two Government
departments. They ought to share a common
commitment to enhance the position of people
with disabilities but they appear, at times,
to be working to entirely different agenda.
We had understood from the Disability Policy
Framework quoted earlier that there was
supposed to be a “whole of
government” approach to meeting the
needs of people with disabilities. Perhaps
Ministers ought to be reminded of this
approach.
We can comment,
however, on what we believe the relationships
and administrative arrangements ought to be.
PDCN believes:
- People with
disabilities and their representative
organisations ought to be consulted about
and involved in the preparation of any
agreements between purchasing departments
and providing departments when services
for people with disabilities are
discussed.
- There should be
transparency about all agreements between
public bodies that concern themselves with
the provision of human
services.
- Agreements should
be readily available for public
scrutiny.
PDCN further believes
that the Standing Committee on Social Issues
should be concerned about the actions of and
agreements between all Government
departments. People with disabilities are too
often pigeonholed as being interested in, or
of interest to, only certain areas of
government responsibility, usually associated
with social welfare. We know, however, that
people with disabilities are whole people,
nominally invested with the full rights of
citizenship. And as citizens we are as likely
to be interested in the behaviour of the
Department of Fair Trading or the Roads and
Traffic Authority as in the work of DoCS or
ADD.
(h)
“the status of the implementation of the
Disability Services Act (1993) in respect
to:
I. the provision of
funding to assist services to reach
conformity to legislative requirements,
and
II. the
implementation of the provisions dealing with
individualised funding
arrangements.”
PDCN draws the
attention of members of the Standing
Committee on Social Issues to the review of
the Disability Services Act conducted by the
Law Reform Commission of New South Wales. We
believe that the Government should adopt the
Commission’s recommendations in
full.
PDCN strongly believes
that laws, regulations, guidelines and other
quality or standards indicators and measures
are only as effective as the monitoring
systems put in place to assess, analyse and
evaluate performance. No proper or effective
policing system with powers exists to ensure
that service providers and services comply
with their obligations. This weakness, which
would not be tolerated in areas such as
financial management or occupational health
and safety, fatally undermines the intention
of Parliament when it passed the Disability
Services Act.
PDCN believes that no
more than token attention has been paid to
the development of individualised funding. We
believe that no meaningful attempt has been
made by Government to promote the principle
and use of individualised funding in the form
of ‘direct payments’ to people with
disabilities.
Payment of a
‘ring-fenced’ grant in the name of
a specified individual to a service-providing
agency is not ‘individualised
funding’. The key to success of
individualised funding lies in an accountable
system of ‘direct payments’ to
specified individuals who then control the
use of those funds to purchase services
needed by them.
Unless and until a
system of direct payments replaces the
current arrangements of allocating funds to
organisations in the name of individuals PDCN
cannot see that any progress has been made
towards individualised funding that empowers
real individuals.
