Contents
1.
PDCN Supplementary Recommendations
-
costs
of disability
- housing
- Attendant
Care programs
- Service
Access system
- PADP
- inapppropriate
institutionalisation
2.
Introduction
3.
People With Physical Disability In
NSW
4.
Living In The Community
5.
Unmet need and the extra costs of
disability
6.
Unmet need for accessible housing
7.
Unmet need for support to live
independently
8.
Unmet need of younger adults in aged care
facilities
9.
Unmet need for transport
10.
PDCN Recommendations from our first
submission
1.
PDCN Supplementary Recommendations
PDCN
supplementary recommendations on additional
costs of disability:
- 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.
- The debate about and
future re-negotiation of the Commonwealth State
Disability Agreement must involve representative
organisations of people with disability, to
assist in determining new relationships between
the respective partners, within a ‘whole
system’ collaboration rather than as a
cost-shifting mechanism for allocating funding
responsibilities.
PDCN
supplementary recommendations on
housing:
- As a minimum standard,
all newly built dwellings in the private and
public sectors must adopt the approach of the UK
Building Regulations, which were revised in
December 1999, to require all new homes to be
“visitable”. At the very minimum, DUAP
must require all developers of newly built
dwellings to ensure that there is level access
at the threshold of the main entrance and that a
wheelchair accessible toilet must be accessible
from that main entrance.
- Promote the adoption of
space, design and barrier-free standards
modelled on the Swedish concept of lifetime
homes that can be adapted to meet the changing
needs of residents throughout their lives. The
long-term savings in public expenditure that
result from investment in homes that support
community living for a long as possible amply
repay the initial expenditure.
- Conduct and maintain an
up-to-date housing stock condition survey with
the purpose of identifying accessible and/or
adaptable housing that is being or could be used
to meet the housing needs of people with
physical disability.
PDCN
supplementary recommendations on the Attendant
Care Programme:
- There should be an
immediate and urgent review of the current
management, administration, operations and
personnel charged with delivering the
ACP.
- The eligibility criteria
for ACP should be revised immediately, with the
intention that the current requirement that
applicants be in an institution or in danger of
being institutionalised abolished.
- Recommendation 16 of the
Attendant Care Review (1997) which stated that
ADD should determine the proportion of people
living in nursing homes and other institutions
who are eligible for ACP must be
implemented
- Recommendation 23 of the
Attendant Care Review (1997), that the priority
remain of existing consumers requiring top up
funding to ensure changing needs can be met,
should be acted upon urgently to allocate funds
to augment services to current users with unmet
needs.
PDCN
supplementary recommendations on the Service
Access System:
- The Service Access System
must be simplified, assessments must be
completed without the current delays and the
process must be de-centralised.
- The principles used to
underpin SAS should be developed within the
context of a framework such as that suggested by
the Disability Safeguards Coalition in its
“Foundation Statement: Principles of
support and safeguards to enable people with
disability to live valued daily lives to
construct an holistic, person-centred assessment
of need regime that works for people with
needs.
- The existing principles
of SAS and more effective management,
administration and implementation of its
objectives should be supported by enhanced funds
to support outcomes that allow people to develop
independent lives in the community without
recourse to assessment of the last
resort.
- Someone outside the
department should investigate what went wrong in
the first year and no one inside the department
should repeat the mistakes.
PDCN
supplementary recommendations on
PADP:
- The budget for PADP for
should be increased as a matter of priority to
at least the level recommended by The NSW
Equipment Study for 2001, which means it should
rise to $19.01 million.
- The State Budget in May
2002 should ensure that the budget for PADP
should be set at the PDCN estimate of need,
which means $25 million.
- Investment should be made
by NSW Health to enhance administration
resources, provide better staff training and,
where necessary appoint additional staff in PADP
Centres to improve service delivery quality to a
consistently high level across NSW.
- Verifiable, reliable and
accurate data must be collected in every PADP
Centre to enable analysis and review of demand,
need and service delivery as promised by NSW
Health
PDCN
supplementary recommendations on inappropriate
institutionalisation:
- There should be an
immediate and permanent halt to the admission of
younger people with physical disability to aged
care facilities.
- As a matter of urgent
priority every younger person with disability
living in an aged care facility should be
offered a range of alternative, fully-funded and
supported options that allow people to exercise
genuine choice about living in the
community.
2.
Introduction
Last year, the Physical
Disability Council of NSW Inc., (PDCN) welcomed the
Legislative Council’s decision to launch an
inquiry into residential and support services for
people with disability. We believed then, and
believe just as strongly today, that such an
inquiry is both necessary and long
overdue.
PDCN agrees with the view of
Standing Committee on Social Issues, as expressed
in A Matter Of Priority, its second report on unmet
need, that:
“Systemic
services to meet the need of people with
disability are a prime responsibility for
government in Australia. Historically, these
services have failed to attract the necessary
resources. There is a need for immediate action
to assist those people in greatest need and to
restore confidence in the disability services
system.”
PDCN has long argued that
action to protect the rights and interests of
people with physical disability (and others) should
be a matter of greater priority and urgency. In our
first submission to the Committee (30/01/00) we
wrote:
“There needs to
be a recognition that people with disabilities
are members of a social minority in Australia
that is economically, culturally, politically
and socially disadvantaged by systemic failures
and inadequacies, including institutional and
individual discrimination. The funding and
organisational problems of “unmet
need”, in relation to formal systems for
delivering social welfare services, are but two
aspects of a much larger failing of our social
infrastructure as a whole.”
“Direct experience
tells us that people with disabilities live with
the consequences of social exclusion every day
of our lives and in all aspects of our lives.
This is the ‘unmet need’ that the
Standing Committee on Social Issues, Parliament
and Australian society as a whole must address
as a matter of urgency”.
Disadvantage and
discrimination continue today. We believe that
inadequately funded and sometimes poorly managed
“disability services” are failing to meet
the legitimate expectations of people with
disability. It is not just the so-called specialist
services, however, that need to be reshaped as a
matter of priority. People with physical disability
do not enjoy the same rights as people with no
disability nor can we take up the same
opportunities. From housing, transport and
employment to sport, recreation and leisure, people
with disability in general, and people with
physical disability in particular, remain, at best,
second-class citizens.
3.
People With Physical Disability In
NSW
According to the Australian
Bureau of Statistics (ABS), people with disability
in New South Wales make up 19.3% of the total
population, the same as in the whole of Australia.
The majority are people with physical
disability.
PDCN represents and advocates
on behalf of the largest group of people with
disability by “impairment type” in NSW
and Australia. The ABS noted that:
“Over half of
all people with a disability had a physical
impairment, (PDCN emphasis) either alone (30%)
or in combination with another impairment (27%).
More than one-third (37%) had a sensory
impairment, around half of these (18%) having a
sensory impairment only. Other types of
impairment were less common, 18% with
psychological and 9% with intellectual
impairment.”
Persons with a disability:
Impairment Types
Age and disability are
clearly related.
Disability rates by age and sex,
1998
4.
Living In The Community
Most people with disability
already live in the community. This has always been
the case and currently, according the ABS, more
than 9 out of every 10 people with disability live
in the diverse communities of the towns and cities
of NSW.
We agree with others, of
course, that we must urgently find ways to end
institutional living for the numerically small but
socially important group of people with disability
who are trapped in inappropriate institutions. They
are prevented from exercising that most fundamental
of rights: To be able to live in a home of
one’s own.
PDCN is absolutely certain
that all people with disability must be enabled to
exercise full and informed choice about the
complete range of living options available to them.
We are sure that when people with disability can
choose genuinely between real options with
appropriate support systems in place they will make
the same set of choices as the whole population.
They will choose to live independently in their own
homes, just like everyone else, in accordance with
their personal circumstances.
No choices will be
realisable, however, if the community remains
unchanged. And for the 90% (plus) of people with
disability already living there already the
problems of daily living in the community are
enormous. It is critically important to the lives
of hundreds of thousands of people with physical
disability in NSW that governments take more action
to address the unmet needs of people with
disability wherever they live. In our view, as a
matter of urgency, we need to close inappropriate
institutions in the interests of the 5% of the
population who remain in them. We no less urgently
need to transform the community for the 95% who
already living there.
It is critically important
that the Standing Committee and Parliament as a
whole understand the reality of life of the
overwhelming majority of people with disability,
more than half of who are people with physical
disability. We know it includes:
- Most people with
disability live on fixed incomes, predominantly
the aged person’s pension or the Disability
Support Pension.
- Most people with
disability live on low incomes that are below
average levels.
- Most people with
disability are not in employment.
- The built environment
– both private and public – is often
inaccessible to or unwelcoming of people with
physical disability.
- Public transport of every
type is mostly inaccessible to most people with
physical disability.
- Access to independent
living support systems is often driven by crisis
management rather than person-centred assessment
of need.
- Equipment for daily
living remains a postcode lottery even though
new eligibility criteria and statewide
procedures were initiated in January
2001.
In this supplementary
evidence we set out key issues of unmet need across
a range of policy areas. We must stress that the
changes we propose here do not always require
Government to spend more money. If a more concerted
effort is made to implement a genuine “whole
of government approach”, the
cost-effectiveness of an inclusive, whole-person
and unifying strategy will become apparent to
everyone.
Two examples illustrate our
point:
- We believe the budget for
PADP needs to be enhanced by about $7 million.
Notwithstanding that view, if every Health Area
collected data on unmet need for equipment, as
it is supposed to, improvements in service
management could be achieved tomorrow without
spending an additional cent.
- The waiting list for
access to the Attendant Care Programme is
increasing even though Government funds
allocated to the programme remain unspent. A
bureaucratic logjam rather than lack of
resources is preventing some people with
disability from living more fulfilled and
independent lives.
Throughout this document we
identify barriers faced by people with disability
already living in the community. It will take new
or redistributed resources to bring down some of
them. Better management of existing arrangements
will be required to bring down others. PDCN
earnestly hopes the reports of the Standing
Committee on Social Issues will be a catalyst for
change with both sets of problems.
People with disability know a
lot about the problems of unmet need. They are part
of our daily lives. We must all work to find
solutions, which we feel are long
overdue.
5.
Unmet need and the extra costs of
disability
- 80% of people with
disability live on fixed incomes, predominantly
the aged pension or the disability support
pension.
- 33% of all people with
disabilities are 65 years of age or over and
not, therefore, in the labour force.
- 53.5% of adults with
disability of working age (15 – 64) are not
in the labour force. This is double the rate for
the population as a whole.
- 21% of people with
disability who are in the labour force are
unemployed. This if almost 4 times the
unemployment rate for the population as a
whole.
- Research in Australia and
overseas strongly indicates that people with
disability have additional, non-discretionary
costs of living that are directly attributable
to their impairment type and/or to the effects
of disability.
- The still unpublished
research by the Physical
Disability Council of
Australia
shows strong evidence that people with
disability have greater costs – on
specialist items and general expenditure –
than people with no disability.
- A survey by the
Australian
Quadriplegic Association
(AQA)
found that among 200 adults with quadriplegia
between one-quarter and three-fifths of
people’s income was spent on
non-discretionary items related to
disability.
- The AQA survey found that
for people whose only income was the DSP, 59%
was spent on disability related items (with
median figure of $5,054 per year).
- The same survey found
that people in employment spent a median figure
of $8,783 on disability related expenses,
representing 23% of their income.
PDCN recognises that income
support is principally a matter for the Federal
Government to act upon. However, as the Legislative
Council considers the question of ‘unmet
need’, it is essential that we acknowledge and
seek to respond to the realities of the economic
circumstances of people with disability.
People with physical
disability of all ages live on incomes that are
below the state and national averages. At the same
time, it is clear that people with physical
disability face higher costs of living than the
population in general. This combination puts people
with disability in disadvantaged economic and
social circumstances.
We believe that the tension
between extra costs and lower incomes places an
obligation on Federal and State Governments to
revise the operation of the CSDA. We need an
integrated look at Commonwealth-State relations.
Historically, the CSDA has been considered within a
“cost-shifting” framework. It has not
been viewed as a ‘whole system’
applicable to people with disability. One
consequence has been that disability support
systems can discourage employment
participation.
A prime example is
illustrated by the way the Programme of Appliances
for Disabled People (PADP) interacts with
Commonwealth rules and an inaccessible transport
system to discourage workforce participation.
Thus:
- For a person who cannot
use a bus or train, and has to use a taxi, the
cost of getting to work each day will be higher
than for those who do not need a
taxi.
- An additional cost of
working is the loss of PADP eligibility, and
public housing entitlement, and higher user-pays
per service eligibility.
These additional costs, which
are a consequence of entering or re-joining the
ranks of the employed population, come on top of
the 40% Social Security taper (or effective
marginal tax rate by the Commonwealth), and more
loss of rental assistance as income goes up. The
upshot is that by working, a person with physical
disability will be out of pocket relative to not
working - unless that person’s income is at
least $45,000.
We cannot, on the basis of
available statistics, be certain of the number of
people caught in this trap. We are certain,
however, that few currently unemployed people with
disability could immediately earn the $45,000
needed to make the transition to work without
losing out financially. It is imperative that we
devise routes into full employment participation
that do not penalise those trying to make that
transition.
PDCN supplementary
recommendations on additional costs of
disability:
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.
The debate about and future
re-negotiation of the Commonwealth State Disability
Agreement must involve representative organisations
of people with disability, to assist in determining
new relationships between the respective partners,
within a ‘whole system’ collaboration
rather than as a cost-shifting mechanism for
allocating funding responsibilities.
6. Unmet
need for accessible housing
Housing is an issue of
critical importance to people with disability.
Living in a home of your own – whether you
rent if from a public or private sector landlord or
own it – is an indicator of independence and
participation in society. Many people with
disability are denied the opportunity to live in
such a home of their own that meets their needs.
The situation of housing inequality experienced by
people with disability cries out for
action.
- Most dwellings are not
accessible. They are not built to barrier-free
standards that would allow people with physical
disability to rent or buy them.
- Marginally less than 10%
of Department of Housing properties are
accessible, although 22% of applicants on the
priority waiting list for housing are believed
to require adaptable or accessible
housing.
- With the exception of
SEPP 5 developments, most newly built properties
are not accessible. It is often impossible for
people with physical disability (not just
wheelchair users) to visit new dwellings, let
alone consider living in one.
- An internal survey of
Housing Department waiting lists in 1997 found
that people with physical disability requiring
adaptable housing wait more than a year longer
to be re-housed than people with no physical
disability.
- People with physical
disability are disproportionately represented in
the top twenty applicants of waiting lists
throughout the Department of Housing. People
with disability rise to the top of waiting lists
as they are managed in chronological order. When
people with disability reach the top of the
lists, however, the lack of accessible housing
means that applicants with no disability are
allocated available properties,
‘leap-frogging’ over people with
disability.
- The “Special
Assistance Subsidy (Disability)” scheme is
a helpful initiative to assist people with
physical disability with unmet housing need. As
welcome as the scheme must be to people with
disability who are assisted by it, PDCN cannot
escape the observation that the very existence
of the scheme is an admission by the Department
of Housing that it’s current housing stock
cannot meet demand from people with physical
disability.
- No reliable data exists
about the accessibility and/or adaptability of
the housing stock in NSW. One Local Government
Disability Officer asserted to PDCN that no
municipality keeps verifiable accessibility
data. His best estimate of the situation in his
own Council is that no more than 15 of more than
2,000 new accommodation units of all types in
all sectors built in the municipality in the
last 5 years “might be
accessible”
- Cash limits, long waiting
times and intrusive assessment regimes can
undermine, delay or prevent the intention that
Home Modification programmes and schemes could
be used to modify a new or existing dwelling to
allow a person with a physical disability to
remain in or move into community
living.
- Larger families with a
member who has a physical disability face
particularly acute housing problems when they
need 3 or 4 bedroom properties.
- People with disability
find themselves (like others on low incomes)
moving from popular and/or metropolitan
locations as they search for affordable,
accessible accommodation. The need to re-locate
to less densely populated, lower cost areas
tends to move people further away from other
services that they may depend on, exacerbating
problems of unmet need.
- New homes being built are
not accessible or easily modified because few
local Councils have development control plans
incorporating the Adaptable Housing Standard for
multiple-unit developments AS4299 and AS3661
(the Slip-Resistant Surface Standard for
pedestrian areas).
What
this means for real people
Systemic failures have real
consequences for real people. A few examples help
to illustrate the reality of people’s lives as
they struggle with unmet housing need:
- A family living in the
Liverpool area that has a son with Muscular
Dystrophy. Their current accommodation with the
Dept of Housing is run down & in need of
modifications such as door widening and bathroom
modifications. The Department, however, refuses
to make suitable repairs, as the house is old.
There are no suitable properties available in
the same area so, that the family can maintain
ties with their local community, their
children’s schools etc. At this stage, the
only other option suggested by the Dept of
Housing is that the family find accommodation on
the private rental market however, finding
modified private rental accommodation is also
proving impossible. Their son’s condition
is deteriorating as he gets older & the
family need an immediate solution. The
Department of Housing has lengthy waiting
periods for relocation to modified
housing.
- A woman who uses an
electric wheelchair and her husband searched for
a wheelchair accessible house to buy within
their budget for over two and a half years. They
could find nothing accessible to them during
that time and have given up the search. They are
currently living in a development they share
with others, on the basis of common disability
issues, rather than choice or
empathy.
- A man in a wheelchair and
his partner inspected 42 different houses in an
unsuccessful search for adaptable premises
within their budget. The couple could have
afforded to purchase any of the forty-two
properties they viewed, all of which required
major or minor alteration to make them
accessible to the otherwise independent
wheelchair user. They have currently abandoned
their search for a more accessible, feeling a
need to set aside for the time-being the
stresses of house-hunting to get on with the
rest of their lives.
- A woman with physical
disability living in a Group Home waited more
than 10 years to be re-housed by the Department
of Housing. At one stage she “fell
off” of the waiting list because her
support staff in the Group Home failed to
respond to a Housing Department request for
updated information. When the error was finally
noticed, the mistake was rectified quickly. The
woman has now been allocated a house and is
“blissfully happy”. Finding a home of
her own, however, should not have taken 10
years.
- One quadriplegic
wheelchair user told PDCN that he lived for a
year in an “inappropriate institution”
before the Department of Housing could
assist.
- “It is common to
find yourself unable to use the
toilet/garage/laundry facilities when renting.
The best I have found is a place with only one
steps to negotiate but it still needed moderate
modification to the bathroom and
kitchen.”
PDCN supplementary
recommendations on housing:
Newly built homes should
meet, where appropriate, the Adaptable Housing
Standard for multiple-unit developments AS4299 and
AS3661 (the Slip-Resistant Surface Standard for
pedestrian areas).
As a minimum standard, all
newly built dwellings in the private and public
sectors must adopt the approach of the UK Building
Regulations, which were revised in December 1999,
to require all new homes to be
“visitable”. At the very minimum, DUAP
must require all developers of newly built
dwellings to ensure that there is level access at
the threshold of the main entrance and that a
wheelchair accessible toilet must be accessible
from that main entrance.
Promote the adoption of
space, design and barrier-free standards modelled
on the Swedish concept of lifetime homes that can
be adapted to meet the changing needs of residents
throughout their lives. The long-term savings in
public expenditure that result from investment in
homes that support community living for a long as
possible amply repay the initial
expenditure.
Conduct and maintain an
up-to-date housing stock condition survey with the
purpose of identifying accessible and/or adaptable
housing that is being or could be used to meet the
housing needs of people with physical
disability.
7.
Unmet need for support to live
independently
In the view of PDCN the
primary objective of social policy in relation to
people with physical disability must be to ensure
that our society creates and sustains circumstances
that make it possible for all people with
disability to live independently in the community.
There are two essential components to achieving
this goal:
- We must work, as a matter
of urgency, to eradicate discriminatory barriers
that prevent people with disability from
exercising genuine equality of opportunity. It
will take effective legislation to protect and
promote the equal human rights of people with
disability.
- We must put in place
effective support systems, regimes and
programmes that some people with physical
disability will require assistance from to
enable them to live independently in the
community of their choice.
Currently, several mechanisms
operate more or less effectively in NSW to provide
support to people with disability living in the
community. We restrict our comments here to five
areas:
- The Home Care Service of
NSW
- The Attendant Care
Programme
- The Service Access
System
- Programme of Appliances
for Disabled People
- People with disability
living inappropriately in aged care
facilities.
Home Care Service of
NSW
PDCN welcomes the
announcement of growth in the number of hours of
home care service in the State Budget in May 2001.
We note, however, that the growth has been achieved
entirely through efficiency savings. No funds have
been allocated to create real funding growth.
Consequently, an opportunity to make real inroads
into the high levels of unmet need has been missed.
It is commendable that the Management of the Home
Care Service is making efficiency saving. Such
savings should have been supplemented by new money
to create real growth at a time of growing unmet
need.
- Despite the growth in the
number of hours available, waiting lists for
Home Care Services get longer, some waiting
lists in some areas have been closed altogether
and current service users are being required to
reduce the levels of support they receive
without an adequate assessment of their needs,
which may or may not have altered.
- We have been told, as
examples of difficulties people have in
accessing home support, that currently the North
Shore office has “closed its books and is
not keeping a waiting list”.
- We have received reports
from several sources throughout NSW that offices
take referral but there is a 6-8 week waiting
period before an assessment takes place and a
similar delay before service commence. One
organisational member of PDCN cited an example
(which we believe to be not uncommon) in
which:
“We referred a family
to the Home Care Service of NSW on the 26.02.01
for assistance with personal care. After a
four-month wait, the Assessment Officer
contacted us on the 12.6.01 to follow up the
referral. At this time, a home care service is
still not in place.”
- We note that 2001 –
2002 targets for available hours for older
people are planned to grow more quickly than
targets for people with disability. We do not
support the arbitrary distinction that has been
drawn between people of different ages. No one
receives Home Care support by virtue of age per
se. The assessment of support required should be
person-centred, needs based and individualised,
not portioned off into arbitrarily defined
client grouping of “older people” and
“disability”.
- A small group of
quadriplegic wheelchair users gave their
assessment of Home Care Service to PDCN. Common
problems, experienced by 7 of the 8 people
informing us (the eight person is not a HCS
user) have been:
- Customers of Home Care
not knowing which staff are going to arrive
when. This issue is discussed regularly with
Branch Manager and Service Co-ordinators but
has not been resolved to the satisfaction of
service users.
- Constant changing of
times to service without notification (Home
Care). Customers are continually discussing
this issue with Service Co-ordinators and
Manager without resolution.
- Lack of communication
by Home Care office. No access to
co-ordinators, messages are not received by
co-ordinators and calls are not returned.
Communication between co-ordinators and field
staff is ineffective and messages are not
getting through.
- Home Care sending
untrained staff to people. Not
resolved.
- The consequences of
new procedures attributed to OH & S
policies are having negative effects on
customers of Home Care, who feel they are
losing their right to self-determination
and/or not being consulted about changes to
equipment and personal care routines. Not
resolved.
- Home Care training
staff in customers’ homes but when the
training is complete the staff members are
allocated elsewhere. This problem is on-going
and unable to be resolved.
Attendant Care Programme
(ACP)
In our initial submission to
the Committee we noted that the waiting list for
the waiting list for the ACP stood at 150 people.
We believe that the most recent meeting of the
Programme’s Selection Panel confirmed
that:
- The current waiting list
holds 140 people;
- At least 6 people have
left the programme;
- The Selection Panel has
deemed at least 9 people on the waiting list
ineligible.
We note, therefore, that
despite the Government’s commitment to fund an
additional 25 places per year during the current
Parliamentary term the ACP waiting list remains
essentially static at around 150 people. We believe
need for the programme is increasing and that the
extent of unmet need has not been adequately
quantified.
We believe that the model of
self-directed support upon which the Attendant Care
Programme is the correct model for many people with
physical disability. We believe it should be used
as the basis to develop and extend a broad range of
independent living options for people with high
support needs to enable them to live in the
community. The current parameters of operation of
the ACP undermine its value, constrain its
effectiveness and lead to mismatches between people
and programmes. These systemic flaws should be
addressed urgently.
- The ACP is currently
restricted to people with disability who live in
inappropriate and restrictive institutional
environments or who are in danger of
institutionalisation. This criterion is
unnecessarily restrictive and may, in our view,
build into the programme a tendency towards
failure.
- Through no fault of the
individuals involved, some people who are
currently living in inappropriate institutions
or at risk of becoming institutionalised may not
be best suited to the self-directing principles
that underpin the programme. Such individuals
may benefit more from a more structured
transition programme to living in the community,
developing independent living skills and
self-directing competencies with support and
assistance such as that provided by the
mainstream Home Care Service.
- In contrast to the above
point, many adults with disability living in the
community, who are not in immediate danger of
institutionalisation but may be living with
parents or siblings who should not provide
independent living support (or would not if the
choice existed), are deemed ineligible for the
ACP; the very type of programme they are best
positioned to make work.
- There is substantial
unmet need for ACP-style support for people who
require living in the community assistance at
school, at tertiary education, in the workplace
and for leisure activities.
- Recommendation 23 of the
review states that the priority remain of
existing consumers requiring top up funding to
ensure changing needs can be met within the
finite resources of the program. There has been
no allocation of funds for augmentation in the
past 2 years.
PDCN supplementary
recommendations on the Attendant Care
Programme:
- There should be an
immediate and urgent review of the current
management, administration, operations and
personnel charged with delivering the
ACP.
- The eligibility criteria
for ACP should be revised immediately, with the
intention that the current requirement that
applicants be in an institution or in danger of
being institutionalised abolished.
- Recommendation 16 of the
Attendant Care Review (1997), which stated that
ADD should determine the proportion of people
living in nursing homes and other institutions
who are eligible for ACP, must be
implemented
- Recommendation 23 of the
Attendant Care Review (1997), that the priority
remain of existing consumers requiring top up
funding to ensure changing needs can be met,
should be acted upon urgently to allocate funds
to augment services to current users with unmet
needs.
Service Access
System
PDCN welcomes the principles
upon which the Service Access System has been
founded and endorses the strategy it seeks to
fulfil. The introduction, implementation and
operation of the scheme have been, to date,
anything but praiseworthy.
The Service Access System has
become a case study in how not to reform social
policy intended to support people with disability
striving against sometimes overwhelming odds to
live in the community. The SAS ought to be renamed
the Service Access Shambles. No system is apparent
and almost no one is gaining access to services
they need.
The Service Access System was
announced in May 2000. At the time the Director
General of ADD launched what was described as an
“Immediate Response Capacity” (emphasis
by ADD). In launching the new capacity the Director
said:
“For the first
time, the Government has recognised the
importance of building some capacity within the
disability services system for responding to
people with immediate needs. In the past the
disability services system often only offered
support as the ‘last resort’
…”
“I am pleased to
announce that now the disability services system
can respond at short notice and introduce
supports for people and their families that
enable people to continue to live in the
community, or be temporarily supported elsewhere
to overcome short term needs”
One year later:
- The Service Planners have
only been announced; a year after the service
itself was announced.
- We understand that
approximately 1,500 applications have been
received through SAS. We can establish no
definitive details of the number of applicants
who have received support as a consequence of
the Service Access System. DADHC officers were
not able to provide even rough estimates of the
actual number of people supported during last
financial year when asked directly at the budget
briefing held in May 2001. We believe that the
proportion of applicants who have been refused
service support to be high and the actual
numbers to receive support to be
low.
- One of PDCN’S
organisational members reports that not one of
the families its supports has been assessed
through the system. Examples of clients who have
applied:
- *22//01/01 waiting 6
months o service / outcome yet
- *06/11/00 waiting 8
months no service / outcome yet
- *10/10/00 waiting 9
months no service / outcome yet
*(Application officially
acknowledged)
- SAS has developed as
precisely that which it was supposed to avoid
– a crisis driven, last resort for people
who may be on the very edge of losing
independence, dignity and control of their
lives.
- PDCN supports and endorse
the operating principles that we understood to
underpin SAS, namely:
- Identification and
prioritisation of individuals eligible for
additional support;
- Independent assessment of
need;
- Flexibility;
- Timely
assistance;
- Independent and
co-ordinated response;
- Maintenance of existing
networks;
- Enhancement of
supports;
- Supported by an
investment strategy linked to a preventative
focus.
PDCN supplementary
recommendations on the Service Access
System:
The Service Access System
must be simplified, assessments must be completed
without the current delays and the process must be
de-centralised.
The principles used to
underpin SAS should be developed within the context
of a framework such as that suggested by the
Disability Safeguards Coalition in its
“Foundation Statement: Principles of support
and safeguards to enable people with disability to
live valued daily lives to construct an holistic,
person-centred assessment of need regime that works
for people with needs.
The existing principles of
SAS and more effective management, administration
and implementation of its objectives should be
supported by enhanced funds to support outcomes
that allow people to develop independent lives in
the community without recourse to assessment of the
last resort.
Someone outside the
department should investigate what went wrong in
the first year and no one inside the department
should repeat the mistakes.
Programme of Appliances
for Disabled People
PDCN warmly welcomes the
changes to the eligibility criteria of PADP and the
new Policy Manual, both of which came into effect
on 1 January 2001. Committee Members will know that
PDCN was a keen advocate of the changes, which we
played a very substantial part in devising. We have
been active and willing participants with other
disability sector organisations and officials of
NSW Health in working towards a negotiated new
regime through the NSW PADP Advisory Committee. We
believe that committee to be a model of productive
and positive collaboration that should be more
readily used in the development and revision of
other state programmes and policies.
The new arrangements are
welcome but that does not mean that PADP is yet as
good a programme as it could be and needs to be. We
believe that substantial levels of unmet need still
exist. Among the problems we would cite there
are:
At the most recent meeting of
the NSW PADP Advisory Committee (May 2001) the
department reported that over one third of Health
Areas in NSW could not provide or had not collected
data on demand for PADP and distribution of
equipment. This failure comes despite a NSW Health
policy that all data of this type must be collected
and a commitment that such data would be analysed
and reviewed after it had been collected for a
year.
- The 12 months of supposed
data collection has come and gone. The
commitment to review real data has been broken
because in a very large proportion of PADP
Centres valuable data has simply not been
collected. As the Crannay Report observed in
1998, adequate budget setting, service planning
and service delivery are virtually impossible if
there is no verifiable, reliable data set on
which to base decisions about PADP or in the
future.
- Too may PADP Centres lack
the resources and staff time to attend
adequately to crucial data collection and
analysis task. Staff members need additional
support and training to increase the skill base
and quality of service to a consistently high
level throughout NSW.
PDCN supplementary
recommendations on PADP:
- The budget for PADP for
should be increased as a matter of priority to
at least the level recommended by The NSW
Equipment Study for 2001, which means it should
rise to $19.01 million.
- The State Budget in May
2002 should ensure that the budget for PADP
should be set at the PDCN estimate of need,
which means $25 million.
- Investment should be made
by NSW Health to enhance administration
resources, provide better staff training and,
where necessary appoint additional staff in PADP
Centres to improve service delivery quality to a
consistently high level across NSW.
- Verifiable, reliable and
accurate data must be collected in every PADP
Centre to enable analysis and review of demand,
need and service delivery as promised by NSW
Health
8.
Unmet need of younger adults in aged care
facilities
Over 600 people with
disability under the age of 50 are permanent
residents living in aged care facilities. That
number more than doubles when people between 50 and
64 are included. PDCN believes that action must be
taken as a matter of urgency to assist people with
physical disability and others living
inappropriately in aged care facilities to
establish for themselves more appropriate community
living arrangements with the support required to
enable them to make and sustain the transition to
independent living.
The benefits to every service
user trapped in this Catch 22 of adopting and
accelerating a supported transition programme ought
to be obvious to everyone:
- Younger people with
disability living inappropriately in aged care
facilities will be supported to live
independently in the community.
- A significant proportion
of the scarce resource that is accommodation
with support in aged care facilities will be
freed up for people who need it and for whom it
was originally intended – older people with
high support needs.
If ever we needed to identify
a clear example of the benefits of a “whole of
government” approach there can surely be none
clearer the benefit illustrated by this
problem.
PDCN supplementary
recommendations on inappropriate
institutionalisation:
- There should be an
immediate and permanent halt to the admission of
younger people with physical disability to aged
care facilities.
- As a matter of urgent
priority every younger person with disability
living in an aged care facility should be
offered a range of alternative, fully-funded and
supported options that allow people to exercise
genuine choice about living in the
community.
9.
Unmet need for transport
The views of PDCN about
transport services and people with disability are
unambiguous and straightforward:
1. We support the
principle of equal human rights.
2. We are against
discrimination that results in less favourable
treatment of people because of their
disability.
3. We believe that
people with physical disability wish to travel by
means of mainstream and that their legal rights to
do so should be enforced if necessary.
4. We believe that all
operators and regulators of public transport
services – buses, community transport,
ferries, planes, taxis and trains must act to
ensure an equal outcome for people with disability
wheelchair. By this we mean that people with
disability must be able to travel by the same
means, at the same cost, to the same range of
destinations, in the same time frames as people who
have no disability.
We make these comments within
the well-known context that no public transport
service operating in NSW comes close to providing
equality of opportunity for people with disability.
No operator can ensure at this point that service
users with disability will have the same outcomes
(in relation to destination, time and cost) as
service users with no disability. We ask the
committee to note:
- 95% of taxis in NSW are
not wheelchair accessible.
- 90% of City Rail stations
are not accessible to wheelchair users and a
very large proportion cause difficulty to others
with mobility problems.
- 63% of Sydney ferry
stations are not wheelchair
accessible.
- 80% of private sector
buses are not wheelchair accessible.
- No more than 35% of State
Transit Authority buses have low-floor
access.
- No more than 20% of State
Transit Authority buses are wheelchair
accessible.
- All but one Country Link
station is wheelchair accessible, which we
applaud, although we note that many Country Link
destinations are actually served by buses, which
are not low-floor design or wheelchair
accessible.
We acknowledge and applaud
the developments that have occurred in improving
accessibility since we made our original submission
to the committee last year. Specifically, we
welcomed at the time of their announcement and
opening:
- Easy Access improvements
to key stations in the State Rail network linked
to the Olympic and Paralympic games.
- The fully accessible
transport facilities at Olympic park and on the
airport link.
- The announcement in the
2001 Budget to upgrade an additional 19 stations
to Easy Access status.
- The development of a
state-wide policy to place ramps on every
platform in the State Rail network and to
improve operating policies for staff to strive
to ensure that no wheelchair user will be unable
to disembark at the destination of their
choice.
- We welcome the
reorganisation of the Department of
Transport’s Taxi & Hire Car Bureau and
feel strongly that it’s enhance enforcement
team and more pronounced commitment to use its
policing powers are long overdue but entirely
welcome developments.
PDCN has just competed a
major submission on wheelchair accessible taxis,
which we would ask the committee to receive and
endorse, particularly where its recommendations
propose action by the Department of
Transport.
We refer members of the
committee to the recommendations on transport
policies set out in our initial submission. We
believe that they remain valid today.
This concludes the
supplementary submission by PDCN.
Dougie Herd
PDCN Executive Officer
Tuesday, 03 July 2001
10.
PDCN Recommendations from our first
submission
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.
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.
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 RECOMMENMDATION
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 RECOMMENMDATION
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.
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
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.
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.
PDCN RECOMMENDATION
17
The NSW Government should
invest an additional $1.4 million in the
recurrent spending budget available to the
Virtual Pool.
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.
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.
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.
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