|
|
The research reported here
was carried out by Christine Gichia, a student in the
Masters program at University of Technology, Sydney, who
completed the research while undertaking a student
placement at MDAA.
MDAA thanks Christine for her work
on this project and her contribution to our knowledge
about the experiences of people from NESB with disability
and their families/carers and their hopes and fears for
the future.
MDAA also thanks all the
people from NESB with disability and their carers who
took part in this project.
Multicultural Disability Advocacy
Association of NSW (MDAA)
PO Box 381
Harris Park, NSW 2150
Australia
Ph. +61 (0)2 9891 6400
Fax: +61 (0)2 9635 5355
e-mail: mdaa@mdaa.org.au
website: www.mdaa.org.au
© Multicultural Disability
Advocacy Association of NSW
First published September
2004
This report is copyright.
Non-profit community groups have permission to reproduce
any part of the report, so long as the original meaning
is maintained and proper credit is given to the author
and the Multicultural Disability Advocacy Association of
NSW. All other persons and organisations wanting to
reproduce material from this report should obtain
permission from the Multicultural Disability Advocacy
Association of NSW.
MDAA is funded by the NSW
Department of Ageing, Disability and Home Care and the
Commonwealth Department of Family and Community
Services.
Introduction: why we did this project
MDAA undertook this project
because many of our family and carer members and
consumers are asking what will happen to the family
member with disability when the carer, be it a parent or
partner or sibling, is no longer able to provide the
level of support required. Similarly, MDAA members and
consumers with disability also worry about the future and
how we will manage when our parents, our partners or our
older siblings are not around to provide us with
support.
From information provided by the
Australian Bureau of Statistics in the 2001 Census and
the 1998 Disability, Ageing and Carers study we estimate
that 5% (314,335) of the NSW population are people from
NESB with disability. As the total number of people with
disability in NSW is 1,221,030 this means that 25.7% of
people with a disability in NSW are from a NESB. This
project therefore has implications for many more people
in NSW than MDAA members and consumers.
We know from past work that
families/ carers of people from NESB with disability
generally only seek help when they reach a crisis point.
Families and carers from NESB carry excessive
responsibilities and may experience multiple layers of
disadvantage - disability, poverty, disruption to the
family as a result of migration, diminished support
networks and lack of sufficient and culturally
appropriate services. In general, carers from NESB have a
'grin and bear it' attitude to an even greater extent
than their Anglo-Australian counterparts. Asking for
support is seen as failing, not only in one's caring role
but also in the family, the community and most
importantly the person with disability.
With an ageing population and
people with disability living longer the needs of ageing
carers are being considered by State and Commonwealth
policy makers and service providers at all levels. So far
as we can tell there is no specific consideration being
given to the needs of people from NESB with disability as
our carers grow older. We have not found any reported
research or government policy statements about this. MDAA
wants to contribute to the discussion of these policy
matters from the viewpoint of people from NESB with
disability.
The main question we wanted to
answer by doing this project was
What are the effects of ageing carers
on the lives of people from NESB with
disability?
To answer this we asked
people with disability and carers from NESB a number of
questions. We wanted to know what hopes and dreams people
have for the future as well as their concerns and
worries. The idea was to paint a picture of what is
happening in the lives of people from NESB with
disability as we grow older and as our families and
carers become less able to provide the level of support
we are accustomed to and need.
I. Results from the research and
implications for policy makers
The following points can be
drawn from the results of this research:
1. People from NESB
with disability are almost exclusively dependent on
their family members for support
Very few people with disability
said they receive support from disability services.
The support received includes home care for domestic
tasks such as cleaning, and occasional respite
care.
2. People from NESB with
disability have no future plans
Most people expressed concern
about the future, eg, who will pay the bills, manage
their money and provide other support when parents or
other family members cannot do it, but most people
with disability had no plans for how to deal with
this.
3. Family members/ carers of
people from NESB with disability worry about the
future for their family member with disability.
When asked about their hopes and
dreams for the future, all family members/ carers
expressed fears and concerns rather than positive
hopes and dreams. The only real hopes expressed were
that the family member with disability would learn to
be independent. As the family members/ carers get
older their focus is clearly on trying to make
provision for the future support for their family
member with disability. Some are focused on remaining
strong for as long as possible because they do not see
any hope beyond their own existence.
II. Methodology: how we did the
research
We explored these questions
in focus groups and individual interviews, either in
person or by telephone, with people from NESB with
disability and family members and carers. From past
experience MDAA has found this the most effective
approach with our members and consumers. For most
participants English is not their first language and we
used interpreters when required.
The focus groups were held first
and the researcher and MDAA advocates who assisted in the
focus groups wrote down the participants' responses, as
some participants did not consent to the groups being
tape recorded. Telephone interviews were used for
participants who wanted to take part but were unable to
leave their home, and face to face interviews were used
for participants who did not want to join the focus
groups and preferred to speak direct to the researcher or
an individual advocate whom they already knew. We
arranged respite for people with disability for family
members and carers who asked for it.
We advertised the project in our
consumer newsletter and e-newsletter and invited people
to attend the focus group meetings and interviews. Those
who responded all live in Sydney and varied in cultural
background, type of disability, sex and age (see Tables
below). We used separate questionnaires for people with
disability and for family members/carers (see Appendix
1). A total of 40 people with disability and 32 family
members/carers took part.
Table A
|
Age
|
Person with
disability
|
Carer
|
|
0-9
|
0
|
0
|
|
10-19
|
9
|
0
|
|
20-29
|
14
|
0
|
|
30-39
|
6
|
4
|
|
40-49
|
7
|
6
|
|
50-59
|
3
|
10
|
|
60-69
|
3
|
4
|
|
70-79
|
0
|
1
|
|
80+
|
0
|
1
|
|
|
M 15 F 25
|
M 11 F 21
|
The people who participated
came from 10 different cultural backgrounds.
Table B
Culture/
language
Arabic
Bengali
Cantonese/ Mandarin
Kurdish
Italian
Maltese
Persian
Philippine
Samoan
Thai
Some people with disability who
participated in this research have very high support
needs. Carers were all family members of a person from
NESB with disability and live with that person, most
often the mother and/or father of the person with
disability but some had a spouse with disability and one
carer was a grandparent. Most people spoke English, with
varying degrees of difficulty, and 13 people needed an
interpreter.
III. Results: what we
found
1. People with
disability
People with disability provided the
following information about their current circumstances,
their concerns and their hopes for the future:
Living
arrangements
- most people live with their
families, usually their parents;
- one lives alone;
- one lives in a group
home.
Employment
- most people with disability do
not have a paid job
- paid employment included
working in the family business; telephone operator;
supermarket packer; childcare; fast food café;
supermarket.
Education
- most people had attended high
school;
- some had completed the HSC
equivalent in their country of origin;
- some completed Year 10
equivalent here or overseas;
- some did not finish primary
school;
- some had completed TAFE
courses.
Disability
- autism
- intellectual
disability
- physical disability
- cerebral palsy
- learning disability
- neurological disability
English language
skills
- 5 people said
'excellent'
- 15 said 'no
difficulties'
- 5 said 'a little'
- 8 people needed an
interpreter
- 4 did not understand the
question
Decision making
- most people said they do not
make their own decisions about what to do, where to
go, how to spend their own money, etc;
- some people were not familiar
with Australian currency;
- some people accompany their
family member/ carer to do the shopping;
- some people make their own
decisions about buying their own things or going out;
- some people need assistance
recognising currency and getting the right
change;
- some people get assistance with
budgeting from their family member/ carer;
- some people would like to go
places but do not know where to go;
- the person who lives alone
makes all his own decisions;
- people who work in paid jobs
make more of their own decisions
Independent living
skills
- some people are confident about
getting around, using a wheelchair, getting public
transport or taxis;
- some people can travel alone
but need assistance with bus numbers and where to get
out;
- some people are not at all
confident of using public transport and rely on their
family member/ carer to get around;
- most people rely on their carer
for cooking, shopping, cleaning
Support
received
- most people get support from
their family members;
- some have respite
care;
- some receive support from
friends;
- some receive home care to
assist with domestic chores;
- a few people receive assistance
with personal care from paid carers: some like and
trust their paid carers but others do not;
- some said 'Centrelink' and the
pension;
- one receives support from a
disability employment service.
Difficulties experienced as the
person's family member/ carer gets older
- mobility
- some people lack confidence in
using public transport alone;
- getting assistance in and out
of bed is becoming more difficult;
- increasingly difficult to get
up hills;
- getting more difficult to move
around and use transport: organising taxis is OK but
need help with trains and buses;
- one person's family member/
carer is sick and has become unsteady on their feet -
this scares the person with disability
- self-care
- some people do not need any
assistance with self-care now (bathing, dressing,
eating, lifting, etc);
- some people need assistance and
this is getting more difficult as they and their
family member/ carer get older and are not as
strong;
- some people need assistance to
get to the bathroom.
- domestic tasks
- some people are finding it
harder to clean the house and cook as their family
member/ carer gets older - one person was particularly
frustrated about this;
- one person's family member/
carer is also now helping her mother and cannot do all
the housework she used to - this inconveniences the
person with disability.
Support required to take better
care of yourself
- most people said they need
someone to cook and clean up;
- some people need assistance
with shopping;
- some people need assistance
with transport;
- some people need a reminder to
take medication;
- some people need assistance
with walking;
- one person needs regular daily
massage of their limbs;
- one person needs education
about sex and protective behaviour - people are
sexually abusing her by unwanted touching;
- some people need assistance in
understanding the opposite sex;
- some people need assistance in
handling money and budgeting their
finances.
Hopes and dreams for the
future
- 'I want training to be
independent and find a simple job'
- 'I want a good job closer to
home'
- 'To get to know the area near
me, know the streets and the roads, where the shops
are and live closer to my family'
- 'Improved health'
- 'Working as a teacher's aide
permanently'
- 'I want to get residence in
Australia so I can get the support I need but I've
been waiting for 5 years already'
- 'I hope that I have sufficient
support for the future'
- 'No other future
plans'
- 'Health to be better than now -
improve health, learn to go around Granville area,
Merrylands and Parramatta'
- 'My carer will improve her
health and be able to get modified housing'
- 'I like to go to
Queensland'
Worries for the
future
- 'No worries'
- 'How to manage my bills - my
mother helps me to budget my money'
- 'I worry about dying. I'm
scared of my sickness. I'm worried about collapsing
along the way because I have a heart condition. I have
to walk uphill in my street all the time.'
- 'I worry about money - do not
have much hope for the future - do not have money for
my funeral - worried what will happen if my carer dies
first?'
- 'I rely on my carer - the only
one who can support me'
- 'I have been waiting for
residence for nearly 3 years - I depend totally on my
carer - I would like support from outside to help my
carer, but not eligible because no permanent residence
yet.'
- 'Who will check that the bills
are paid?'
- 'How will I keep my job
permanently?'
2. Family members/
carers
Family members/carers provided the
following information about their current circumstances,
their concerns and their hopes for the future:
Employment
- most family members/ carers had
no paid employment and stayed home to provide full
time support for the family member with
disability;
- some family members/ carers had
retired from paid work;
- some family members/ carers had
part-time or casual paid jobs;
- one family member/ carer is a
doctor.
Education
- some family members/ carers had
finished high school;
- some family members/ carers had
completed tertiary study at university or
TAFE;
- some family members/ carers had
not completed primary school.
English language
skills
- 5 family members/ carers needed
an interpreter;
- 16 family members/ carers had
no difficulties with speaking and understanding
English;
- 11 family members/ carers spoke
a little English.
Disability of the person cared
for
- autism
- intellectual
disability
- physical disability
- cerebral palsy
- learning disability
- neurological disability
Type of support provided by
family members/ carers
- personal care
- almost all family members/
carers provide some personal care for the person with
disability (dressing, undressing, bathing, personal
hygiene);
- some provide assistance with
feeding;
- some family members/ carers
provide daily massage for the person with
disability;
- one family member/ carer
provides minimal personal care.
- domestic
tasks
- all family members/ carers
undertake house cleaning, laundry and cooking for the
person with disability.
- shopping
- all family members/ carers do
the shopping, some with assistance from the person
with disability;
- some family members/ carers
accompany their adult child with disability shopping
because they do not understand money or what is
appropriate and often choose the most expensive
things;
- most family members/ carers
carry the shopping themselves.
- transport
- some family members/ carers
provide assistance with transport, driving the person
with disability to appointments, shopping, etc, and
assisting the person to transfer from the car to their
wheelchair;
- some family members/ carers
rely on public transport: trains, buses and taxis to
get around;
- some family members/ carers
accompany the person with disability on public
transport because the person does not understand which
direction to take or bus number;
- one family member/ carer
accompanies her family member with disability
everywhere because he gets angry and loses his temper
if people do not understand his needs;
- some family members/ carers
said transport is always difficult to
arrange.
-support provided by other
people to the person with disability
- most support is provided by
parents (the mother in most instances) or spouse;
other immediate family members provide additional
support when required;
- some people also have the
support of close friends;
- some people with disability go
to respite care, eg, once a month on
weekends;
- some people receive assistance
from Home Care;
- at least one mother gets no
assistance from the father to care for their adult
child with disability;
- family members/ carers provide
support at home because there are no services
available or they are not aware of them, especially
migrants who have recently arrived in Australia;
- family members/ carers were
ambivalent about seeking assistance from paid carers,
as many believe the paid carers do not give the person
with disability the attention required.
Difficulties experienced as a
result of getting older
-mobility
- some family members/ carers are
having increasing difficulty using private transport
because of having to lift the person with disability
in and out of the car;
- some family members/ carers
have arthritis and can't lift heavy things, eg,
shopping;
- some family members/ carers
reported that it is getting more difficult to assist
the person who has a disability with walking, eg,
getting to the bathroom;
- family members/ carers reported
that it is getting more difficult to go out as they
get older.
- self care: for the family
members/ carers and the person with
disability
- family members/ carers are
experiencing back pain and finding it more difficult
to lift the person with disability - transferring from
wheelchair to toilet, or in and out of a car, from
wheelchair to bed and vice versa;
- one family member/ carer said
that he now has to ask his wife to assist in lifting
the person with disability when he used to be able to
do this alone;
- one family member/ carer said
she has a very small bathroom and it is becoming more
difficult for her to assist her son (who now weighs
over 100kg) with bathing, dressing, undressing,
etc;
- one family member/ carer noted
'all done with difficulties';
- one family member/ carer noted
that her family member who has cerebral palsy can only
move one hand, so the family member/ carer does
everything for her.
- domestic
chores
- most family members/ carers
reported that everything is getting more difficult or
taking longer, including cleaning, laundry, cooking,
shopping, lifting.
- other
- one family member/ carer said
it is getting more difficult to make decisions for his
daughter;
- some family members/ carers
manage the person with disability's finances, eg,
compensation money;
- some family members/ carers are
experiencing stress because they don't know what will
happen to their family member with disability as the
carers get older.
Hopes and dreams for the
future
a) for yourself
- 'I hope an institution will
take her and care for her - my worries are because she
can't talk and express what she needs. I am not sure
that anyone who is not related will be able to care
for her.'
- 'I really hope that my (own
medical condition) will get under control or there is
a chance for me to go in remission so to be there for
(my son) as long as possible.'
- ' I want my son to be trained
to live independently and find a simple
job.'
- 'Justice.'
- 'My hopes are: my wife to
improve her movement with my help and others.'
- 'I wish I am still strong
enough have a good job my husband for earning for our
living and most I wish my husband will be cured and
have a very good health and have our own modified
house and modified car as well. To be able to
socialise again.'
- 'I hope that I'll be strong and
able to do the chores for him all through. And I wish
that my pension should increase being a carer so I
could meet the expenses in bringing him out to
socialise.'
- 'Live long enough to see my son
care for himself.'
- 'I want to learn new skills
about caring, relaxation and manual
handling.'
- 'I want respite from my (family
member).'
- 'I would like to meet other
carers to discuss ways to help ourselves.'
- 'Find out about what service
are available now and the criteria they require, eg,
at the MDAA Carers' Expo.'
- 'To be appreciated and
recognised for the work I am doing as a
carer.'
- 'To get residence in Australia
to be able to get services.'
- 'I want service providers to
listen to carers, not just consult the person with
disability, because we are involved and we know what
is happening. Service providers recommend things the
carer is unable to do. Carers are ignored and never
consulted even though we know what is best for the
family member with disability in some cases.'
b) for the person with
disability you are supporting:
- 'For him to become more quiet
as he tantrums so that it will be easier for the other
people and myself to communicate with him. I also hope
that for him to be able to have a good quality in life
there should be a lot more support form the
governments in order to make it easier for the ageing
carer and the disabled as we both get older and
especially when the carer is no longer there…what
happens to the disabled then?'.
- 'Compensation from medical
insurer and church.'
- 'To help herself constantly as
I help her so much she will improve with her walking
and movement.'
- 'I worry because where I am
going to get the money for his funeral expenses in
case he die before me?'
- 'I have no idea where she will
go when we die - parents are busy. When I talk to her
parents they refuse to do anything and leave it to
us'.
- 'I am hoping that our Lord will
make him sensible and independent so he could be able
to live properly by himself especially when I am no
longer around. And I hope I could find a place for him
to socialise with people who could speak properly
because when he mingles with people who are worse than
he is he only copies them and acts badly.'
- 'To see him care for
himself.'
- 'Get to know other people with
disablity.'
- 'Participate in social
events.'
- 'Learn new skills to help him
live independently.'
Worries and concerns for the
future
- 'What happens when I the carer
am no longer available?'
- 'Reduced income after I retire
- who will provide continuing care after my
demise?'
- 'Who will take over as her
parents are not keen? No-one can provide her good care
- she cannot express herself.'
- 'Lifting the wheelchair taking
inside the train, pushing around the shopping complex,
pushing wheelchair in any road crossing.'
- 'I am afraid I will not be
strong enough to take care of him in the future. I
worry for him when I'll not be around any more that
he'll not be taken care of the way I used to because
all me children are working besides they have their
own families.'
- 'No worries for myself but for
my son: where will he end up after I'm not here to
help him any more?'
- 'I am 65 + years, very small
lady but I always doing very hard job. Rehabilitation
treatment and services; carer respite; always need to
be careful to keep copies of everything - medical
records; don't always get a chance to supply
information, history, what is happening, so medical
people understand the disability thoroughly.'
Appendix 1
QUESTIONS FOR PEOPLE
WITH DISABILITY
1. Sex: M
F
2. Age: 0-9
10-19
20-29
30-39
40-49
50-59
60+
3. a) What is your
job? b) How far did you go at school?
4. What is your
disability?
5. What languages do
you speak at home?
6. How well do you
speak English? Do you need an interpreter?
Excellent.
No difficulties.
A little.
7. Do you live with
your family, by yourself, or somewhere else
(specify)?
8. Do you make your
own decisions about what to do, where you go, spending your
own money, ect?
9. Where do you get
support?
Family
member(s).
Paid support worker.
Friend(s).
Others (specify).
10. What are some of
the difficulties you are going through, as your carer gets
older? Are the following things hard to do, or getting
harder?
Mobility
(transport, getting around, moving around the house,
going out).
Self-care (bathing, dressing, lifting, eating).
Domestic chores (cleaning the house, cooking, shopping,
laundry).
Others (specify)
11. a) What skills do
you have now to enable you to do some things for yourself,
like,
Making decisions (do you
make decisions for yourself or does someone else do
that).
Self-care (bathing, feeding, toileting, personal
hygiene).
Cooking (preparing food, cooking it).
Shopping.
Using public transport (trains, buses, cars, either personal
or taxis).
Other (specify).
b) What support do
you need to help you to take care of your self better, e.g.
Cooking.
Cleaner.
Shopping.
Transport.
Other (specify).
12. What are your
hopes and dreams for the future?
13. Is there anything
you worry about for the future?
QUESTIONS FOR
CARERS
1. Sex: M F
2. Age: 10-19
20-29
30-39
40-49
50-59
60+
4. a) What is your
job? b) How far did you go at
school?
5. Do you live with a
person with disability you are caring for, eg, in the family
home or in some other arrangement?
6. What type of
disability does the person you are caring for
have?
7. What type of care
do you provide?
Personal care
(bathing, toileting, shaving, brushing teeth).
Domestic chores (house cleaning, laundry, cooking).
Shopping.
Transport (public and/or private).
Other (specify).
7. Does the person
with disability that you care for receive support form other
people, like family members, friends, paid support
worker?
8. What language/s do
you speak at home?
9. How well do you
speak English?
A little
No difficulties
Excellent
Do you need an interpreter?
10. What are some of
the difficulties you are going through as you get older, in
providing care for the person with disability?
Mobility (yours and
the person with disability, such as transport, getting
around, moving around the house, going out).
Self-care (yours and the person with disability).
Domestic chores (yours and the person with disability,
such as cooking, cleaning, shopping, laundry).
Others (specify)
11. What are your
hopes and dreams for the future:-
a) For
yourself.
b) For the person with disability you are caring
for.
12. Is there anything
you worry about for the future
a) For
yourself.
b) For the person with disability you are caring
for.
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