3.1 Comments
provided by people with physical
disabilities
PDCA in preparing this
submission to ‘The Cost of Disability
Study’, distributed information on the
study to all state and territory representatives
in each PDC, as well as organisations and
individuals with a registered interest in the
work of PDCA. We asked people to contribute
specifically to the identified items given in
the study. The following comments (in italics)
are the result of the request for
comment:
3.1.1 Transport and
Travel
For most people with a
physical disability, the only form of public
transport available is the taxi. Most states
have a Taxi Subsidy Scheme, but this only pays
half the cost and is not transferable between
states. Taxis can cost up to $10,000 - $15,000
per year.
Travel for people with
disabilities usually involves months of
planning, days of phone calls, then the expense
of high priced accommodation in order to get
accessible rooms, the hire of large cars to
carry equipment, plus the added cost of fares,
accommodation and wages for escorts and personal
carers. For those who travel frequently, either
for work, pleasure or medical reasons, will
benefit from lightweight equipment and would
also benefit from duplicate equipment (an
expense directly related to their
disability).5
It has been argued that
fully accessible public transport will provide
benefits not only to people with disabilities
but to many other people in the Australian
community including the ageing population,
people with temporary disabilities and parents
with small children and prams. The
‘real’ issue surrounding the lack of
public transport is the cost factor. People with
physical disabilities are the most disadvantaged
sector in that, not only are there few
alternatives, but the available alternatives are
costly, inconvenient at times, unreliable and
detract from the aim of independence and
inclusion in society.
Consumer comments for this
study and particularly in response to
consultations on the DDA Transport Standards
have indicated an overwhelming need and support
for accessible public transport in
Australia.
In a survey of consumer
organisations which was commissioned to
determine the ‘real issues’ facing
people with disabilities, 88% of all respondents
reported that access to public transport was a
major problem as it restricted their
participation in education, employment, medical
appointments, shopping and recreation (Downie,
1994).6
As of January 1997,
results from submissions to the DDA Transport
Standards became known. From these submissions,
respondents indicated that they ‘relied
almost exclusively on access cabs for their
transport needs. For this group, the main impact
of accessible public transport will be
financial. Although smaller than the public
transport user group, people with disabilities
reported that they (collectively) spend on
average $21,908 per week on transport, four
times the amount public transport users
spend.7
In remote Aboriginal
communities ‘there is no transport for aged
or disabled communities. They have to rely on
the good will of the Council, School or Health
Centre. To catch the community bus for
ceremonies will cost on an average $120 return
out of their pension and as ceremonies are very
important to the aborigines in communities, a
lot of people will go without food. The reason
they don’t go hunting for food is because
you need a
vehicle!!!!!!”8
Consumer
comments:
“The cost of
travel to and from specialised appointments
out of Tennant Creek are never fully paid for
by the government and I have to make up the
difference myself, for my son to see these
people, which can be very
expensive.”
“ I am fully
employed, so therefore am not eligible for
some of the services available if you are on
a disability pension. It is necessary to
purchase and maintain a vehicle to provide
necessary mobility for work and recreation. I
also needed to purchase a hoist for my car to
stow my wheelchair - this was an added
expense, but makes it possible for me to be
more independent.”
“I travel to work
in my car. If I caught a taxi it would cost
me approximately $200 per week (with
subsidy), this amounts to $9600 per year.
Driving my car still costs me around $8,000,
taking into account purchase, registration,
maintenance and petrol. But I have no choice.
There is no suitable accessible
transport.”
“Parking is the
other issue associated with the costs of
travel. It’s essential if you have a
physical disability, to park in a place that
has access, safety and security and is within
an easy distance from your
destination.”
“A new car I
bought, which would take a manual wheelchair,
had to be sold within a year, (at
considerable monetary loss) in order to buy a
station wagon to be fitted with a hoist to
take an electric wheelchair. As an interim,
ramps were purchased, but my Carer’s
back could not cope with the
strain.”
“Transport is a
MAJOR issue. While most public transport and
services are NOT ACCESSIBLE, fatigue issues
mean that only wheelchair taxis are suitable
for me. Even with the taxi subsidy voucher,
they are far too costly to use to maintain a
lifestyle of regularity, going out, they are
also too few and unreliable.”
“I have received a
Sales Tax Exemption on a motor vehicle but
the rising cost of cars means that I will now
apply for the Mobility
Allowance.”
“ I find using
public transport rather difficult, so I have
to use a car”
“I cannot use
public transport, so I have to use a car to
go everywhere, this means that I have to pay
substantial parking fees even to visit a
public hospital”
“Taxi fares are
costly, even though
subsidised”
“There is no
accessible public transport, and so to go
anywhere, the local shop, or 500 km to
Melbourne to see a specialist, I have to use
a taxi.”
“The income
support schemes and allowances do not
compensate me fully for the extra costs I
face in not being able to access public
transport”
“ I spend around
$2,500 a year on petrol travelling to and
from work and a couple of hundred on tolls.
Then there is
registration, insurance
and repairs to my vehicle. The Mobility
Allowance is around $57 a
fortnight.”
“My parking bill
in the city is $6,000 per
year”
“Lack of access to
public Transport imposes severe burdens on
the person with a physical disability
”
“The high costs of
getting to work, dissuades people with
disabilities from employment and social
integration.”
“Limited capacity
for access and to pay for resources
required.”
“Often the costs
of transport are insufficiently subsidised
and access to local agencies is not
sufficient to meet the
needs.”
“Trains and taxis
are the only public transport available.
Trains are inflexible with times and in short
supply, hence taxis are used to travel long
distances frequently, and even subsidised
taxis are expensive.”
“There is no
public transport for people with disabilities
in Tennant Creek so I have to rely on other
people to get me around.”
“ I have to rely
on family to get me around in Tennant Creek,
if I go away to see a specialist, it often
costs me a lot of money as the amount
reimbursed by the government does not cover
the cost and is not reimbursed until weeks
after I return.”
3.1.2 Prescriptions
and Therapeutic Consumables
People with physical
disabilities do not live with their disability
in isolation. For many, there is ongoing medical
treatment or monitoring, resulting in continual
use of prescribed drugs and consumables. For
those eligible for a Health Care Card or
similar, the costs of prescriptions are reduced,
even so, the frequency of medication and usage
will mean that the cost is continual, therefore
substantial over the period of a
year.
In the budget of September
1996, the cost of prescriptions increased from
$2.70 to $3.20. To compound this $166.40 would
have to be paid for prescriptions at full price
before the concessional rate could be claimed.
That was an increase from the amount of $140.40
at the time The safety net remained at $600,
after which $3.20 would be paid. The cost and
availability of some drugs also
changed.
One consumer writes
“In order to get $50 extra a fortnight,
through the Mobility Allowance, and therefore
some deductions with considerable prescribed
medication costs, I am pushing myself to
voluntary work at least 8 hours a week, but am
concerned that I may not be able to keep this
up. The loss of the …$50 per week and some
concessions would make things difficult for
me.”9
In remote Aboriginal
communities there are similar issues:
“There are no prescriptions used in
aboriginal communities. Where medication is
required, the clinic has to absorb the total
cost. If they run out of money for medication
too bad. The Aboriginal Health worker is also
placed in an awkward position. If the Disabled
person has to have specially prescribed drugs
and therapeutic consumables it all depends on
the budget for the whole community or that group
of people are encouraged to go to Darwin and
then Danilla Dilba has to absorb the cost. The
disadvantages is spread over aboriginal
organisations which disadvantage the urban
aboriginals.” 10
Many people with physical
disability are members of the CAAS scheme, which
has an allocation of $450 per person per year,
to ‘buy’ essential commodities
particularly for bowel and bladder management.
PDCA is aware of the many protests and
dissatisfaction from consumers who are
‘members’ of CAAS. For this reason
PDCA recommends the following:
a) Review of the
allocation of $450 per year per eligible
person in many cases this will exceed the
need.
b) CAAS should be
determined on an individual needs basis, not
an ‘across the board’ allocation of
$450.00
c) Remove the age
limits to ‘members’ when they turn
the age of 65
d) Instigate a CAAS
scheme for children - CAAS for
kids
e) CAAS to remain
funded by the Commonwealth with national
standards and guidelines
f) Establish a national
committee with consumer representatives to
ensure CAAS accountability
g) Establish a
complaints mechanism as part of the national
committee responsibilities - not just resting
with the department.
Consumer
comments
“The cost is
subsidised by my son’s health care card
so this expense is kept low, but can get
expensive sometimes.”
“The cost of my
medication is only half covered by the
prescription allowance, I have to often pay
large amounts for medication and it is very
hard to pay for …when there is no money
left out of my pension, so often I put my
health at risk and without the
medication.”
“ The cost of
prescriptions for me is extremely high as I
have to pay full costs for my medication
until I reach the PBS Safety Net limit, then
the cost drops on only some of my
medication.”
“Prescriptions
currently cost around $120 per annum, this is
conservative.”
“No Social
Security Pension often means - increased
medical costs with prescriptions, health
practitioners and aids and
appliances.”
“Cost of
medications, many items are not on the
pharmaceutical list”
“ We need to watch
this government, who are advocates of user
pays.”
“Living in remote
and rural areas increases the cost of these
goods dramatically.”
“Not always
available in rural and remote areas and
postage and/or freight is often added to
account for the cost of delivery from other
larger centres.”
“The cost of
prescriptions per month for me is $25.00 per
month.”
“ I have diabetes
as well as a physical disability. My
medication costs me approximately $20 per
month, and that doesn’t count all the
blood tests, additional screening, different
food, and the cost of my physical
disability.”
3.1.3 Health
Practitioners
Visiting medical
facilities is part of everyday living for a
person with a disability. Often the medical
practitioner being the vital link between a
healthy lifestyle and dependence on hospital
care as an inpatient. People with a physical
disability are no exception.
Visits to medical
practitioners can be inconvenient, having to
organise transport and assistance to get there
as well as costly if the service does not bulk
bill to Medicare. Many people in rural and
remote areas have to travel long distances to
see Specialists in main centres: “The
Allied Health people only get to visit once
every two months if they are not seconded to
other parts of the Department for six months or
more (as has happened in Darwin Remote). The
service is ad hoc and now with the Coordinated
Care Trials where the Aboriginal Communities
have to purchase the above services - it will
depend on what the communities priorities are
and disability is not one of
them.”11 People living in the
suburbs of larger cities, can also be faced with
long journeys to the city to see
Specialists.
In the September 1996
Federal Budget, it was announced that out of
hospital specialist services would rise from
$30.60 to $50 on November 1996. It was also
announced that there would be no possibility of
doctors billing Medicare for services of unusual
length or complexity. Just such services are
often required by people with physical
disabilities, due to the complexities or obscure
nature of the disability or its impact on their
ability to physically assist the doctor when
requiring an examination.
Some Specialists do not
bulk bill and require payment ‘up
front’, this means that the individual is
faced with a large account to pay, as well as
the costs associated with getting to the
Specialist in the first place. Medical
practitioners also referpatients to other
services, such as Physiotherapy, Radiology,
Occupational Therapy and many other specialist
facilities, to follow up on diagnosis or
treatment. Health Insurance can often offset
some of these costs, but people with physical
disabilities pay a substantial loading on the
premium as with personal life
insurance.
Dental care is another
area where people with physical disabilities
have been financially disadvantaged. Previously,
people who were on a Disability Support Pension,
could access Commonwealth Dental Services.
however in the 1996 Budget came the announcement
that: at the end of 1996, the Commonwealth
Government would abolish the Commonwealth Dental
program. Four million concession card holders
will no longer have access to free dental
treatment!
Consumers
comments:
“My son gets this
service for free, but if he has to go to
Alice Springs (500kms away) or Adelaide
(2200km away) it can be quite
expensive.”
“Health
practitioners is a free service to me, but
getting to and from them is
costly.”
“I have to pay
full price for any of these services,
I’m not entitled to any
concessions.”
“I choose to take
out Hospital Cover, rather than just rely on
Medicare because of my disability and the
need for a Doctor of my choice. In recent
years I‘ve had a number of trips to
hospital, which has incurred additional
expenses.”
“Medicare is at
increased risk of being dismantled or watered
down further, pushing costs of health care on
to consumers. People with disabilities should
resist these changes.”
“Access for people
from rural and remote areas is extremely
expensive for those people who have
disabilities. Often the costs of transport to
medical facilities, are insufficiently
subsidised and access to local agencies is
not sufficient to meet the needs. In
addition, any access to private health care
such as therapy is financially not viable for
people with disabilities and many people find
access to public systems an access issue in
terms of prioritising, waiting lists,
distance etc.”
“The CAAS has been
a God send BUT I was only accepted because I
get a “Mobility Allowance! I get
catheters, gloves, continence sheets,
dressing packs, laxatives, lubricants,
syringes, sterile water, catheter valves and
more. What will I do if I can’t keep
pushing the voluntary work?”
“There is no
competition so prices remain
high.”
“Doctors
don’t always bulk bill and I have to pay
up front.”
“I have to travel
long distances to see the
doctor.”
“My doctor has
moved , there goes my continuity of medical
care.”
“I have to drive
to the doctor, or get someone to take me,
otherwise I can’t get
there.”
“The cost for
doctor’s visit per year for me is:
$120.00 per year”
“There’s no
point in me taking our Health Insurance, I
have to wait ages before I qualify to get
reimbursement for the pre-existing
conditions, ie physical
disability.”
3.1.4 Hospital
Visits
Hospital visits will often
have unpleasant memories for many people with a
physical disability, having spent long periods
of recuperation, rehabilitation and
treatment.
Hospital locations are not
always near the persons’ home, particularly
in rural and remote areas. This can result in
one or two of the family members travelling to
the hospital, accommodating family members
nearby, travel costs and distance, to and from
the hospital for visits, (especially if it is
outpatient treatment) childcare arrangements and
costs, and loss of income for family members who
work and for the person with a disability, who
may also work.
Consumer
comments:
“There is no cost
for this service to me, but the only service
available in Tennant Creek is bad. I had to
get a dressing changed the other day and I
had to wait for 7 hours for this to be done
and for a person who is disabled, sitting for
seven hours can be very painful and
uncomfortable.”
“Here in Tennant
Creek, hospital is free as it’s a public
hospital but if I go away, I have to pay for
these services.”
“I need to travel
a long way to access the hospital (at least 2
hours).”
“The cost of
accommodating my family if I go to hospital,
is enormous.”
“If I go to
hospital, that means loss of
wages.”
“Out of pocket
expenses after my last hospitalisation were
$150.00”
“At the moment the
major problem is finding accessible
accommodation available in Darwin for
disabled people to access the Royal Darwin
Hospital and Rehabilitation
Centre.
3.1.5 Housing and
accommodation
Many people with physical
disabilities, particularly those who rely on
wheelchairs and other aids for mobility, are
severely limited in their housing choices, not
only through low work force participation and
higher unemployment rates, but also through lack
of provision of barrier-free, adaptable housing,
particularly in the private sector.
Housing choice is as
important to people with physical disabilities
as anyone else in the community. Housing choice
must take into consideration affordability,
appropriateness (accessible design, safety
features), security of tenure and location
(proximity to family and social networks,
services and facilities).
PDCA is aware that many
people with a disability, particularly
wheelchair users, are so severely limited in
housing choice (whether home purchasers or
private renters) that they must spend more than
otherwise on purchasing or renting larger or
more modern housing within close proximity to
specialist services).
For instance, in Sydney, a
person without a disability can buy a 2 bedroom
unit, in a 3 storey block, for a cost in the
vicinity of $90,000 - $100,000 OR a house that
is slightly run down, requiring a little
maintenance and building skills, for around the
same price. On the other hand, a person with a
disability cannot live in a 3rd floor unit
unless there is an elevator OR alternatively a
person with a physical disability will have to
buy a modern house in the city and pay up to
double the price, or buy a cheaper modern house
situated miles out of the city with little or no
access to transport and services. That is,
people with a physical disability are forced to
pay up to $100,000 more for a house than those
without a disability.
In large cities, many
people with disabilities choose to settle in
areas close to the hospital, or in suburbs with
other accessible facilities and services. These
are generally high cost areas. The alternative
is to purchase or rent affordable housing on the
urban fringe, where necessary services are so
few, and taxi transport costs are
astronomical.
In remote communities, the
story is the same: “If there is an aged
home or type of institution in the community,
disabled people cannot stay there as it is too
expensive. The standard 85% charged by the
commonwealth deprives the person (aboriginal) of
extras such as attending ceremonies (and there
may be approximately 100 + per year at
$120).”12
Consumer
comments:
“There is very
limited amount of disabled housing here in
Tennant Creek.”
“We have had to
rent privately (in Tennant Creek), we are
lucky our landlord doesn’t mind the
modifications we have had to
do.”
“With public
housing rental rising all the time we find it
very had to pay our rent, also getting
anything done to the house is just about
impossible or it takes months or years for it
to be done.”
“I am not eligible
to receive rent assistance as I have
medically retired (age 34) and receive a
fortnightly superannuation
payment.”
“I think a person
living in inner Sydney would face additional
costs from a similarly disabled person living
in the Western Suburbs.”
“Housing reforms
propose that market rents be charged for
properties according to their location. For
many people living in inner city areas, this
will result in an increase in rent and a
reduction in the ability to afford the other
necessities of life”
“Public housing
policies which cater for the social
integration of people with disabilities needs
to be fostered. Also banks should be lobbied
by disability community for greater access to
cheap and affordable
finance.”
“Major issues for
both adults with disabilities and families of
children with disabilities. The cost of
modifying premises and lack of support in
this area is one specific
barrier.”
“Severe lack of
accessible housing especially Department of
Housing. This leads to consumers paying for
expensive modifications.”
“Suitable housing
for people with physical disabilities is
often only for those who can afford proper
modifications. Modified Department of Housing
buildings are usually totally inadequate. I
am helping coordinate a housing co-op for
people with physical disabilities to build
their own purpose built housing with
community housing funds. My fear is that if
the Federal Government abolishes community
housing funding, where do people with special
needs adequately live?”
“I am currently
trying to purchase a property - I do own the
unit I live in, but wish to move for a few
reasons. I want to remain in the same area if
possible to maintain current networks and not
be any further from my place of employment. I
have spent considerable time and money
chasing around looking at various properties.
Without exception, all the properties I have
looked at would have needed considerable
money spent to make them accessible because
of my disability.
The trick is trying to
find something with the least to spend.
…Expense would cover such things as ramp
access to eliminate steps, alterations to the
kitchen because the bench tops are too high,
alterations in the bathroom, again because of
access problems, shower recess etc.
…Added to the purchase price, the whole
exercise becomes impossible.”
FOOTNOTES
1 Australian Bureau
of Statistics, 1993, Disability, Ageing and
Carers Summary of findings. Australian Bureau of
Statistics Catalogue No. 4430.0,
Canberra
2 Australian Bureau
of Statistics, 1993, Disability, Ageing and
Carers Summary of findings. Australian Bureau of
Statistics Catalogue No. 4430.0,
Canberra
3 Comment from
participant submission to PDCA. April
1997.
4 Churches Agenda
for Housing Reform, Australia 1996
5 Murray. Max.,
Extra costs of Disability. Personal Comments to
PDCA submission. April 1997
6 Downie, Angus.,
Target 2015 A Vision for the Future Access to
Transport in Australia for all Australians.
August 1994. Australian Government Publishing
Service.
7 Corcoran.
Maurice. Transport Standards Update - Part II in
Quadwrangle Newsletter. February 1997.Australian
Quadriplegic Association.
8 Danilla Dilba
Aboriginal Organisation for people with
disabilities. Darwin. NT.
9 Comments from
Colleen Percival
10 Danilla Dilba
Aboriginal Organisation for people with
disabilities. Darwin. NT.
11 Danilla Dilba
Aboriginal Organisation for people with
disabilities. Darwin. NT.
12 Danilla Dilba
Aboriginal Organisation for people with
disabilities . Darwin NT
