PWDA Income Support and You! Response Register
In light of the government announcing it is reviewing the Welfare System and considering changes to income
support payments such as the Disability Support Pension, the PWDA Board created a Facebook Forum event
where our followers, members and friends were invited to comment on questions and issues concerning income
support for people with disability on Saturday 8 February 2014 10am to 2pm.
30 discussion starter threads (listed under Questions) were posed by the board. Participants were also invited to join the
conversation on Twitter using the hashtag #pwdadsp. Discussion was also free-ranging and many participants initiated their own
questions and issues for discussion (listed under Topics).
The forum attracted approximately 800 comments and what follows is a selection of representative issues. These are people’s
actual words. Text is include ‘as is’. Spelling or grammar has only been corrected in some instances to clarify statements. We have
done our best to fully anonymise this document. Approximately 125 people took part.
Table of Contents
Questions............................................................................................................................................................................................2
1 - Is Disability Support Pension enough to live on? Why? ...............................................................................................................2
2 - Can you afford the basics, like food, shelter, medicine, clothing on the DSP? ............................................................................4
3 - Have you ever applied for the DSP and been denied access to it? What did being denied access to the DSP mean for your
life? ...................................................................................................................................................................................................5
4 - Does the DSP support you to properly live as a member of your community or just survive? Why? ...........................................6
5 - If you were denied access, do you know why? Did you appeal this decision?.............................................................................6
6 - Can you afford all the things you would like to have or do, on the Disability Support Pension (DSP) including things like going
out with friends, going to the movies, participating in sport, recreation, holidays, entertainment? ....................................................6
7 - Do you use your concession card for public transport? Would you be affected if your pensioner concessions were reduced? ..8
8 - How important is the PBS (subsidised pharmaceuticals from the chemist) are to you? Do you have a lot of medication you
need to buy? .....................................................................................................................................................................................8
9 - DSP substantially reduces if you are a couple and are both on DSP. What effect do you think this has on developing,
sustaining or leaving relationships? ................................................................................................................................................10
10 - If you get mobility allowance – does it cover your needs for fuel or fares, to places of work, volunteering or education? .......11
11 - Have you ever applied for mobility allowance and been rejected? Why? ................................................................................11
12 - Do you think the mobility allowance needs to be improved? How? Ideas welcome. ................................................................12
13 - How would you be affected if the Government cut your DSP down to the Newstart rate (around $751 to $501)? ..................13
14 - If you have been moved onto Newstart or sickness allowance in the past, what effect did that have on your life? What would
happen if the Government stopped your DSP? ...............................................................................................................................15
15 - What would it mean for carers, family members and people around you if your DSP was reduced or stopped? ....................17
16 - What effect would it have on your relationships if your DSP was reduced or stopped? ...........................................................18
17 - Can the government improve the DSP? What are your thoughts and suggestions? ...............................................................18
18 - Your DSP is supposed to be reassessed every two years. What is it like being reassessed regarding your eligibility for the
DSP? ..............................................................................................................................................................................................19
19 - Do you have any thoughts on the frequency of these eligibility re-assessments? ...................................................................20
20 - The Government is thinking about different rates of DSP for different people. What do you think about this idea? ................21
21 - If there were different rates of DSP, how do you think they should be assessed? Should this depend on your disability?
Should different issues come into the assessment, like support needs? category of impairment? impairment tables? ..................23
22 - What do you think about a temporary category of DSP for people who might be able to return to work? ...............................25
23 - How do you think the temporary category should be assessed? .............................................................................................25
24 - What do you think the risks are with a temporary DSP? ..........................................................................................................26
25 - Does the idea of losing DSP if you get a job deter you from seeking work? ............................................................................26
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26 - If you could hold onto DSP for 6 months after starting work would you be more likely to look for a job? .................................27
27 - Do you feel you would be worse off or better off, if you were working? ...................................................................................27
28 - If there was one thing you could change about the income support system, what would it be? ..............................................28
29 - Do you think there are better ways to provide income support, than the current system? .......................................................29
30 - The forum is nearly over. Are there any other income support issues you want to raise? .......................................................29
Topics................................................................................................................................................................................................31
Access to Centrelink .......................................................................................................................................................................31
Accessibility of the Facebook Forum ..............................................................................................................................................31
Claims Processing Times................................................................................................................................................................31
“Deserving” Welfare Recipient ........................................................................................................................................................32
DSP and Economics .......................................................................................................................................................................33
DSP and Eligibility ...........................................................................................................................................................................33
DSP and Gender.............................................................................................................................................................................37
DSP and Housing ...........................................................................................................................................................................38
DSP and Income Test .....................................................................................................................................................................39
DSP and Overseas Travel ..............................................................................................................................................................40
DSP and Poverty ............................................................................................................................................................................43
DSP and Psychosocial disability .....................................................................................................................................................44
DSP and Rural Issues .....................................................................................................................................................................46
DSP and Sole Parents ....................................................................................................................................................................47
DSP and the NDIS ..........................................................................................................................................................................48
DSP and Work ................................................................................................................................................................................48
DSP and Welfare Review (2014) ....................................................................................................................................................51
DSP as baseline allowance or entitlement ......................................................................................................................................52
Financial Advice ..............................................................................................................................................................................52
Health Care Card ............................................................................................................................................................................53
Informal Supports............................................................................................................................................................................53
Medicare and access to physiotherapy ...........................................................................................................................................56
Superannuation...............................................................................................................................................................................57
Questions
1 - Is Disability Support Pension enough to live on? Why?
A "live" needs to be defined. DSP is basic survival money, hardly covering costs like rent and food - to live is something other than
just surviving with deficits [7 likes]
B I have been offered some work where i will be away from home. I only receive HACC funded carers through the local council. To
get carers when I am away it will cost approximately $50 per hour. That is $100 a day for carers. The government want people to
work but I seriously need access to funding to be able to fulfil this work commitment. I am stuck in the middle. Where is funding to
support people who work as sub-contractors? [2 likes]
C I agree I think there needs to be a distinction between living and surviving [6 likes]
D the so called government need to give us more money to live on what we get now doesn't last considering those living
independently have bills and rent to pay what is left wouldn't be very much [3 likes]
E not if you want to access any kind of medical treatment for your disability. [4 likes]
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DI am currently looking for a job to help pay my bills etc would this mean if i did get a job i would lose my pension? or do i get to
keep it? i have been on the pension since i was 16 and i am now almost 39 [1 like]
F Ive started doing home care just to get extra money [1 like]
G no different in a fully supported unit. you have no extra cash to buy or go anywhere. your really a prisoner on the outside [5 likes]
B The DSP may be just enough to survive on but it doesn't allow for any social life which then leads to metal health issues like
depression. Having a disability can create a vicious circle. [5 likes]
H Short answer: "no". Though this question requires a complex answer when it comes to people with profound disability. I think the
DSP has evolved to cater for mild to moderate disabilities and has failed to provide for those who have profound disability. Few of
whom will have a 'career' spanning 40 odd years. rather our careers, if we are fortunate enough to have one, are likely to be short,
interrupted and insecured. We are less likely to be successful in securing mortgages or have substantial opportunity to contribute to
superannuation. And yet, we are subject to the same income and assets tests as other pensioners (except if we are legally blind, in
which case we can earn however much we like). [6 likes]
A Thats true B - no social life means not going out with friends even for simple things like coffee, or a few drinks at the pub, it is
simply out of the question. [3 likes]
E yeah but even then A its often too much. My GP will refer to me to at least 2 different specialists the second I mention my
disability and any issues I might be having. "oh lets get your heart checked and then you should see an osteo" and who ever else
he can think of. By the time you have an initial assessment then any tests they want done and then at least 1 follow up appointment
the fee's are astronomical. I just don't bother any more. I live in regional area, city would be easier [3 likes]
H Partnered couples (where both have significant disabilities) are especially disadvantaged by the income and assets tests. I
suggested already that this perceived, if not actual, financial disincentive to partner is quite possibly contrary to the Disability
Convention. It is based on the notion that two people can share domestic resources. it fails to account for the disability related costs
and the need to rent larger premises to accommodate wheelchairs, etc. [4 likes]
I @A I only get $400 a fortnight for DSP as I am not yet 21. It makes it incredibly difficult to save for holidays etc although I do cut
out a lot of things so I can go on holidays. I live with my mother and am always feeling guilty because I am not able to give her the
money it requires to look after me (fuel to run an expensive van, repairs for that van, pads etc which she pays for because she
loves me). I can't wait for the day I turn 21 so I can give my mother more money and also have more money to put into my savings
for holidays I would love to take. [2 likes]
J There is a good deal of variation. At one extreme, home owners with a working spouse, and no major medical pharmacy,
transport, therapy or other needs. For just day to day living, yes, it is sufficient. At the other end, singles, renting, with no savings,
no appliances, no car, major ongoing medical pharmacy and other costs. In that case no, not at all.
Those other factors should be dealt with separately, but currently are not. So the question simply can't be answered with a yes or
no. [1 like]
K its enough to exist on but not live on
L I think the Disability Support Pension is enough to live on, but if the government takes it away, there will be a lot of people who
will be in trouble. Some weeks I earn $25, but other weeks I earn $200 so I rely on the DSP to live! [11 likes]
M B even though i love you ,I have to disagree the DSP isn't enough to support a person who wants to live independent, who
doesn't have the ability to earn extra to help bump up there pension amount, taken into account a lot of people on DSP cant drive a
car so they have to rely on taxis etc to get around even with the half price taxi scheme these fares take up a lot of your money, also
just having to buy crutch tips every 6 weeks can eat into your amount( there is no funding for these products) [7 likes]
A I live frugally. I catch the train if i can, i cant catch buses. i garden, which i am lucky to have that ability. I rely on food from friend's
gardens. We are like that in the country, we share eggs, if we hunt or fish, we share meat. We share our vegies. I have to be tight
with money. But there is no secret govt depts holding secret funds out there. You must fit certain criteria to qualify. And so be it. I
dont need the care some other people with disabilities need, i dont need the wheelchair. But i have needs as well. If i go off the
rails, i need a hospital, i need psychiatric care. i need pain medication for my injuries and paralysis. we are all diffferent and we
need to SHARE with each other as much as possible, both physically, emotionally and spiritually. [4 likes]
A I have relied on Vinnies and for the most pat they are great volunteers. One person was patronising out of say, 10 interviews.
Telling me i should get some work. i nearly spat chips as i'd just been fired, but i was polite and calm.
K sorry but its a real penny pinching and looking for marked down food and specials and the rates are always going up, electricity
increases nearly killed me, haven't eaten brussel sprouts for at least 4 years because I could not afford it [2 likes]
N Having come from a healthcare background (lapsed RN) and living with multiple medical issues, my experience of the DSP is
that it is INADEQUATE TO MEET THE BASIC DEMANDS OF LIFE - rent, food, fuel, rego, electricity, clothes - and so by virtue of
this poverty it puts a person into - is UNABLE to reach what a person NEEDS for healthcare or rehabilitation or care of ONE
disability, let alone reach into supporting a persons issues that spin off this. It does as it is says - SUPPORTS DISABILITY and
does little to nothing to RESOURCE or help a person LEVERAGE their abilities or capabilites to reconfigure their life or move
themselves into a better position. Bodies also take time to heal and this isn't a process that a person can determine. The payment
level of DSP ensures that it's difficult to go anywhere much other than around in a circle of stress confusion and depression. I have
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nearly gone insane with the stress of trying to cope with huge health/medical stuff that I couldnt have seen coming (trauma
background) and the ADDED ADDITIONAL STRESS of not ever having enough to cover what my life or my health needs or
demands. In effect DSP FURTHER DISABLES and compromises a person by limiting them to such an imprisoned level of inability
to function - in effect imposes another level of disability and within this my health has further deteriorated with diagnosis going to
the next level. And the system offers NOTHING and NO WHERE TO GO WITH THIS SITUATION. If DSP had more money with
which to reconfigure their life and adjust to their changed circumstances as is needed with medical issues and serious body stuff
that HAPPENS to people, more people would be able to eventually move off DSP in time as they recover and rebuild their lives. So
in effect the governments poverty consciousness of punishing people for being ill and needing help and the lack of social humanity
and caring about what peoples REAL NEEDS ARE - possibly costs the country more in the long term through loss of skills,
willpower, self determination and abilities, and eventually loss of any hope of the person ever returning to work or contributing what
they may have otherwise contributed. I can see that for some people it is a no win situation and one they could just give up on. A
healthy society can do better this and needs to because every person in a society has value and worth, sick or well. [9 likes]
2 - Can you afford the basics, like food, shelter, medicine, clothing on the DSP?
A Most of my clothes are op shop, 2nd hand. Food has to limited, there are no luxuries, so i rely on friends gardens, and my garden
when i have it. not everyone is lucky enough to be able to garden [2 likes]
A Rent - for shelter. I live in a 150 year old former hospital, the floor boards have rotted, the roof leaks [2 likes]
O I seem to be able to afford my needs. I live in Ipw Queensland, In dep of housing by myself and do not own a car I sure these are
major savings to someone on a DSP. I travel by maxi taxi or wheel every where in my power chair. Personal situation must play a
role in afford ability. [1 like]
A at $340 a fortnight, including rent assistance, its still a big chunk out of DSP $751.70 a fortnight [2 likes]
P I don't think I would have the same quality of life if I did not live at home [3 likes]
P In order to get more people into work there needs to be better support and awareness for employers so they can see the value in
actually employing people with disabilities [4 likes]
Q My food runs out after about 3 days. My rent is $440.00 a fortnight which even though I pay it I think it is professionally
discriminative very much so to people with a disability and without even with the DSP. [2 likes]
R Forget about having savings too, virtually impossible while on the DSP. [4 likes]
S Im lucky to be in a situation that I dont have rent or a mortgage, but I still have other living expenses, like power, thats our biggest
expense. you only get a discount for 1 life supportive appliance per person. But we have more than 1 here. Our child is on
supportive nutrition, so theres more expense. we have rates that now have next to no rebate now. Some months all I can say is
thank god for support from our local charity organisations. [1 like]
T On about $1,000 a month - $500 a fortnight without the mobility allowance, the money doesn't go very far. I can afford my
groceries, but I can't afford things when I need them or when some of my electrical appliances are broken, or some of my office
equipment needs to be repaired, I can't always afford it. [4 like]
T And also too, as I was saying before, on this type of income, I cannot afford to go out at all - because it's very expensive to travel
on my own using a disabled wheelchairs accessible taxi these days. [3 like]
U no money for clothes, the second hand shop is the only way to buy clothes, sometimes have to cut medication and food is what
ever is left [3 like]
V I'm going to be totally honest and say St Vinnies & Salvation Army have been an absolute huge help to us. The last year
especially has been extremely difficult and without these people I don't know where we'd be. They have assisted us in paying
important bills, with food parcels & vouchers. [3 like]
W I can now that I’m sharing with a low income earner and we can assist each other with being frugal and split
electricity/water/phone/internet/etc. AND because I’m in public housing so my rent is very low. Without both of these things being
simultaneously true, I have needed charity stuff for long periods in the past and imagine I would again... [3 like]
X Just...but only because I live in public housing and get maintenance for my 16 yr old son...otherwise no I wouldnt be able to
Y Try living on the DSP and having a guide dog and keeping up with running a house alone then your dog needs vet treatment well
let me tell you , you feel like a charity case friends family and guide dogs help but $3,650 isn't easy to find when you only get 650
per fortnight not much fun but keep smiling that works $
Z I wouldn't be able to afford anything if I wasn't married. I know that can be looked at as a blessing for me but it doesn't make me
feel like much of a person. I can't support myself. I feel like I am viewed as a charity case by the system. And a bit of a prostitute. I
get paid for by my husband and in return I present wifely duties for him.
AA Enough to not be seen by the community, not irritating people around them. They are quietly waiting to die in sleep. Even if it's
a small percentage of population having disability, we should assist them hopefuuly to stand on their own, and be a member of the
comunity. This is not possible without government's proactive assistance in counselling, education and coaching BEFORE the
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disability become really serious. Not AFTER they can not even move, dress, or eat themselves. It will cost a lot more from the
government when they have to spend the rest of their lives in nursing homes. There will always be smart guys who will take
advantage of the government system, but they will perish by doing so. Government needs to focus on supporting genuine people s
who have real needs, not considering those who may take advantage of the system. They will die with their knowledge n their
money like ashes. But really we should be concerned about and focus on those who have real needs. If the government focuses on
fraud cases with suspiscious eyes, goverent will never see the positive effects and real impact on the people it wants to support,
and see the society they want to see. [2 like]
BB It is very hard. I have to live by a very strict budget which doesn't allow me to have much of a social life. Lucky to be able to go
out for lunch with friends every 6 months as I can't afford it, so it isolates me further. I have had to cancel many a specialist
appointment because I cannot afford the hundreds of dollars required to see them. Their solution is just pay by credit card and
claim it back, but you only receive a small portion back and then left with paying interest on your card... They don't seem to
understand the issues that people have and a lot of them won't bulk bill. I truly think this is such an important issue that ALL
medical visits should be bulk-billed for people on DSP. Every year I have to attend around 15-20 specialist appointments, if not
more than that. Last year I would have been closer to 30 and that doesn't include my normal doctor visits. It is hard when dealing
with multiple health issues!!!
BB Then add the cost of medications prescription and over the counter that I require... Plus transport costs to and from
appointments etc. It is so hard. Yet we are treated as if this is some picnic we are on. Sitting back living and loving life on the
government - so wrong!!
A Not being able to afford a cappucino or beer with mates, does isolate me. [2 like]
J Agree A. It is the little things that get to you. Can buy clothes in an op shop, I'm not that fashionable anyway. Can make choices
about a lot of things to keep costs down. But the fact is the socialising goes on over a coffee or a beer. And it's tough when you
can't afford that. [1 like]
CC The issue of tailoring hasn't come up for those with significantly different body types/shapes and also purpose built shoes for
amputees and others who need it. Unless you can afford a trip to Bali costs are way high [1 like]
DD Guys, when I do go out to meet with friends, I take my own food! I have the thermos my mum bought me ages ago, I stick it in
a bag on the back of my wheelchair. My cups all have the non-spill thermos lids, so I can carry a cup of coffee(it can be a bit of a
problem when the service dog alerts to panic attacks though)...The only real good part of being undiagnosed is I have no really
expensive meds to buy, panadol really blows my budget out.
N Having come from a healthcare background (lapsed RN) and living with multiple medical issues, my experience of the DSP is
that it is INADEQUATE TO MEET THE BASIC DEMANDS OF LIFE - rent, food, fuel, rego, electricity, clothes - and so by virtue of
this poverty it puts a person into - is UNABLE to reach what a person NEEDS for healthcare or rehabilitation or care of ONE
disability, let alone reach into supporting a persons issues that spin off this. It does as it is says - SUPPORTS DISABILITY and
does little to nothing to RESOURCE or help a person LEVERAGE their abilities or capabilites to reconfigure their life or move
themselves into a better position. Bodies also take time to heal and this isn't a process that a person can determine. The payment
level of DSP ensures that it's difficult to go anywhere much other than around in a circle of stress confusion and depression. I have
nearly gone insane with the stress of trying to cope with huge health/medical stuff that I couldnt have seen coming (trauma
background) and the ADDED ADDITIONAL STRESS of not ever having enough to cover what my life or my health needs or
demands. In effect DSP FURTHER DISABLES and compromises a person by limiting them to such an imprisoned level of inability
to function - in effect imposes another level of disability and within this my health has further deteriorated with diagnosis going to
the next level. And the system offers NOTHING and NO WHERE TO GO WITH THIS SITUATION. If DSP had more money with
which to reconfigure their life and adjust to their changed circumstances as is needed with medical issues and serious body stuff
that HAPPENS to people, more people would be able to eventually move off DSP in time as they recover and rebuild their lives. So
in effect the governments poverty consciousness of punishing people for being ill and needing help and the lack of social humanity
and caring about what peoples REAL NEEDS ARE - possibly costs the country more in the long term through loss of skills,
willpower, self determination and abilities, and eventually loss of any hope of the person ever returning to work or contributing what
they may have otherwise contributed. I can see that for some people it is a no win situation and one they could just give up on. A
healthy society can do better this and needs to because every person in a society has value and worth, sick or well. [9 like]
3 - Have you ever applied for the DSP and been denied access to it? What did being denied access to the
DSP mean for your life?
NN Just made me stronger in myself, and I just get on my life, After working in the Disability industry I knew that once I went to F/T
work, I would NEVER get back on it as the government was changing the structure, to claim a DSP [2 like]
OO They put me on Newstart but said i don't have to look for work. [2 like]
PP Just because people cant see some peoples disabilities they think the person doesn't deserve the DSP I have panic attacks no
one can see my illness the depression, how I have to spend hours just to get myself to go buy food and have to take someone I
trust with me to do simple things because I just cant go on my own I survive on the DSP each pay have to work out who needs to
get paid who can wait after bills I usually only have 60 dollars a week to buy food and household needs toilet paper etc. this is not
the choice I want for my self but no one wants to employ some who just cant cope with just being in the room with strangers and
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can get in a panicking rage when forced to. I need DSP they put me though hoops to get it with doctors and councilors so what
would I do if they took it away sell my little home not be able to help my aged mum and live on the street where I nearly ended
up.And think people forget we on support of any sort spend every cent in our communities can the rich say that ! [3 like]
U I know someone who has had their claim rejected and is trying to live on Newstart feel very sorry this person,he has now very
depressed,SAD. [2 like]
W I was initially told not to apply for DSP by centrelink and put on Sickness Benefits for 2 years, as appropriate for somebody if
they are not sure their condition will be permanent. After 2 years they told me to apply for DSP. [1 like]
RR I had my claim rejected & was sent to a lot of job networks that couldn't help me ! I was sent to nova employment where my
caseworker seen how sick I was & came with me to my doctors & made sure he filled the paperwork in properly & when I reapplied
I was granted DSP [1 like]
SS I helped a friend apply for DSP a few years ago. He had chronic PTSD with severe anxiety and because of this he couldn't even
catch a bus without having a panic attack. We decided to apply for DSP as he wanted to start living again and be able to afford to
see a counsellor that could help him move on with his life (he couldn't afford this on newstart). As a surprise to us both, his
application was rejected. Less than a year later he was dead.
4 - Does the DSP support you to properly live as a member of your community or just survive? Why?
O Transport costs are a major issue. I can only travel be maxi taxi and even with state government subsidy its not really affordable
[4 like]
A There has only been 0.4 percentage point real growth in the DSP over the past decade (after indexing to working population
growth. [2 like]
B I wouldn't say live. I would say survive. With medical costs for specialists and medication, transport costs for taxi, cost of needing
personal care, the general living expenses there is not room to enjoy life let alone cover the above costs mentioned. It is hard to be
an active member of the community when it requires getting from A to B = more money. [2 like]
O My application 4 mobility allowance is denied as I work in different rolls and grants are not counted as hours. Nor my art study. I
can't prove 32 hrs a month to centerlink though I do more. aby ideas? [1 like]
UU Transport is a major issue and it helps to have a GP that helps you access cheap services. Being referred by other
organisations can also help jump over some waiting lists. [2 like]
S the DSP doesn't support me enough to live at all. i have a mortgage payment of $366 a week which i share with my mum. i rely
on my mothers financial support to live as i have medical expenses on top of normal living expenses. electricity bills are beyond a
joke, then there are insurance costs, food is expensive [2 like]
R I think exist is very apt. As a Carer who does get the Carer payment my husband and I (who does get the DSP) are rarely able to
splurge and go out. When you factor in his meds, my meds, trying to run a house pay utilities run an old car that constantly needs
work, there is not much left. The same apples for our son who has intellectual disability. Once he pays his program charges and
taxi fees, then there are clothing expenses, medications and other needed incidentals there is not much left. He manages respite
and recreation twice a month if he is lucky. That is not always due to $$$ it is also due to lack of opportunity. [2 like]
S the costs for somebody with a mental disability is different to a person with spinal injury. [3 like]
A Absolutely true, S [1 like]
V When my husband and I married the DSP was significantly reduced. Why is it reduced because we chose to get married. [1 like]
U YOU JUST SURVIVE
5 - If you were denied access, do you know why? Did you appeal this decision?
CCC my gf was told by an assessor yesterday, that in the assessor's opinion that Asperger's was not a Disability at all. It is just a
phase her daughter is going through, her daughter just started receiving youth disability allowance a month ago, and her mother
appealed for DSP, so after the Assessor told my gf that Asperger's is a phase, she is assuming then she will not get DSP at all.
She also told my gf that when her daughter reaches 22 (or before if the Government introduces a new system soon) that her
daughter would go onto Newstart and would be assessed on a monthly basis by an assessor. [1 like]
6 - Can you afford all the things you would like to have or do, on the Disability Support Pension (DSP)
including things like going out with friends, going to the movies, participating in sport, recreation,
holidays, entertainment?
B In simple terms - NO. [4 like]
Q I can't afford to go to movies, going to restaurants buying presents for relatives, travelling interstate Le alone internationally. To
me these are all pipe dreams which will never happen. [3 like]
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EE I live on the dsp and am buying a home but as i do i have not seen my wife and famliy now for all most 3years as thay live over
seas ok [1 like]
FF My daughter is on DSP I am on carer pension we can't afford to live let alone have money for entertainment [5 like]
A i get upset when i cant buy christmas or birthday presents, i really do [3 like]
GG I get by on the pension but as many have said holidays are generally only a dream unless family help with paying for it [2 like]
G no holidays not good cuts of meat. we live on basics. just enough to pay the bills [1 like]
C I'm lucky because I have casual employment and live with family otherwise I would miss out on these things [1 like]
D definitely not by the time the bills and your rent is payed what are we left with I'll tell you what we are left with very little [2 like]
V A holiday! We wish. Nothing left by the end of it. Medication, bills, etc. [4 like]
P People forget that people with disabilities want to have a good life too. We may have to save up for things and it may take us
longer… [5 like]
BB I'm barely making the rent, bills are overdue, and food shopping, what's that? [5 like]
HH on Twitter says: I already have to chose between my medication & food most months. Often I choose which meds to go without
#pwdadsp [2like]
A Yeah a holiday is a dream. [1 like]
A For cripes sake i want a Jetski, modified for use with one left hand. lololol i'd be a crip superstar. We see all these great people
doing great things with disabilities, but it is simply unaffordable for the rest of us, Jeebus i like flying aeroplanes, or riding Harleys....
all unaffordable. All a dream. And yet the advertising machine says we need to spend spend spend and "you can realize every
dream, if you just wok hard enough" what a load of bollocks. [3 like]
II JUST EVEN TRYING TO GET BATTERIES FOR MY SCOOTER OR NEW SHOES EVEN WITH THE GOVERMENT
ASSISTANSE IS HARD [2 like]
U A holiday what is that, [2 like]
N Often postpone medical appointments with specialists as dont have the extra $225-400 needed to consult them before medicare
refund. So health issues grind on without attention. [4 like]
W To get a taxi from my place to my parents’ place, after 50% discount from discount card, is $20. Family wonder why I can’t visit
them too often … [3 like]
G I have discussed this issue about specialist with NDIA. as if he is unable to access them he is unable to access his medication as
a general gp is unable to write up the script as he does not have a mental disability although one could argue that. If he was not
funded he would not be taking this med as he just wouldn't have the money to buy it [2 like]
JJ My dream is to b able to walk n or afford a wheelchair but I can't with bills [1 like]
KK I'm tryn to train for a world strongest disabled man comp, and on just dsp it's impossible and there is no addition support for
anything like that even though places claim help for disabled athletes [2 like]
LL The only way I can afford to go to movies is to budget months in advance (gold class!)... I havn't 'been out' in well over a year,
just don't have the spare cash [1 like]
DD On the DSP I can't afford a special rug for my service dog, summer's the time to buy one cheap. My government funded
wheelchair was just out to get the motor replaced, it's come back still lop-sided (the batteries are shoved to the left of the battery
'thing' which makes the whole chair lean...), I don't have the proper cover for the controller, and the front wheel has snapped off. I
can't afford to get my shopping delivered anymore, so I'll have to take my dying wheelchair and my service dog puppy and do my
own shopping.
What are movies? I have to go next door to even watch TV! [2 like]
BB They are luxury items. My family will often buy me for my birthday or christmas a ticket to something I want to see. Or all put
money toward me saving for a holiday etc., or an item I cannot afford as that is the only way I can do it. I have become quite
isolated these days because I do not have the money to go out socially, then there's also the other aspect that going out socially
wipes me out for days after the event. I have to carefully plan things like that in advance and rest for a few days before going to an
evening event out etc. I also many times can plan things and then not be able to attend because even with careful planning my
symptoms just may not allow it to happen.
X I would like a dishwasher as doing dishes kills me, I also NEED a new mattress and a car with automatic transmission but I cant
afford to save (I can barely remember what that word means) and I cannot get finance of any sort as the pension isnt enough to
cover their criteria. I too have to choose which meds to go without to be able to buy food for myself...I make sure my son has food
and I only eat once a day more often than not. Any money left for fun...no..simple answer ...no.
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CC For disabled people with children, poverty impacts upon the whole family. Young people need health care, school uniforms,
books...and it is a hard thing saying no to a child who wants to go out with his or her friends to do something basic like see a movie.
Social disadvantage just because a parent is disabled - that's not fair. [2 like]
MM can not save to get the van that i need, have a car that doesnt transport chair it is good for much of what i do but a long way
short of the independence I had with a fitted out van and hoist that I had when working which is now owned by ex. I will never be
100 % independently mobile like this ever again, can not possibly afford such transport on a pension.
Z My husband and I live pay check to pay check (his pay check). I'm unemployed and get next to nothing on the DSP
($20.90/week). The thing that I would love to have is savings. We will never own a house. Yes, we will go on cheap holidays
because we want to while I still can. We save as much as we can before the holiday, which means doing nothing for at least a
month. When we get home we are back living paycheck to paycheck. I never thought that this could happen in a country like
Australia. Unless you have to live in the lifestyle that we all live in, it is unknown about and ultimately ignored.
7 - Do you use your concession card for public transport? Would you be affected if your pensioner
concessions were reduced?
S I cant get onto public transport with my Powerchair, Taxi vouchers still cost a bit of money... I used them sparingly. Yes, a
reduction would affect us my husband is a dual carer for my son & I. We have a small car, if we couldnt get a concession on rego
we would have problems. You still have to buy a greenslip! We have to tow a trailer for my chair as we cant afford to buy a van. [2
like]
DDD my husband is on my card and has used it, im lucky as i can drive and do not need public transport but im not always able to
drive my husband around and where we live if we didnt have my card the cost of the p/t would be expensive. [1 like]
B I would if I could access the local train station (Werribee). A massive ramp to get up to the platforms and the gaps between
platform and train (width and height) are ridiculous. I see abled bodied people struggling with it. I am no longer able to so the
comment is onselete in that respect. We need better access. This is a premium station and because it is such a safe labour seat
nobody is throwing money at it to fix the issues and sway local voters. [3 like]
S i have my own private van thanks to family support. even with a taxi subsidy card it's unaffordable on the DSP to use taxis on a
regular basis. cheaper owning your own van. [1 like]
A Thanks for the comments everyone. I use my card for train transport regularly, i find it useful, especially to get to Sydney, but I
know from experience, gained from other disabled friends, that it is very hard, to negotiate a wheelchair in many circumstances on
to the train. [1 like]
A i just wish there were more trains and accessibility for everyone. [2 like]
III The taxi subsidy scheme, should become a national system, with a national recognised card. Not the current docket system used
in some states. Anyone travelling interstate has just about every taxi driver say they don't know about interstate taxi subsidy
schemes. [4 like]
J A lot of public transport is free for people with disabilities, but not all. And most of it is inaccessible. But there would be many that
use it as there accessibility needs are different. And paying full fare is just one more barrier to leaving the house. [1 like]
U public transport is out of the question [1 like]
G Not everyone who has a disability has free public transport. I have two that don't get it free. [1 like]
W I get free public transport through Melbourne’s wheelchair pass scheme which is not sufficiently widely known about - I only
found out through another Facebook contact! http://ptv.vic.gov.au/tickets/free-travel-passes/scooter-and-wheelchair-travel-pass/ [1
like]
O I don't think taxi drivers want to understand TASS or want too? [1 like]
8 - How important is the PBS (subsidised pharmaceuticals from the chemist) are to you? Do you have a
lot of medication you need to buy?
S yes and even with the PBS rates it's gone up to $7 for each script which still runs into a lot of $$ for multiple scripts. [1 like]
JJ I have heaps of meds to buy if we loose pbs I'm going to b dead prob within 6 months [1 like]
R Absolutely vital to have. My husband is on an enormous amount of medication. Without it we would have had to find $900 a
month for his meds, which would have been impossible [2 like]
JJJ yes I do I am thankful when I meet the PBS safety net and we earn good money or I would be dead [1 like]
A My medicine is worth over $250 a packet, without PBS, and i take a lot of different medications. [1 like]
G vital. and with the safty net. my son deeds websters too which is another added cost per week just so thers dont make a mistake.
if he was home he wouldnt need that cost [2 like]
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O I think the PBS thesehold in too high for those with multiple medical issues! Not all my medications are covered by the PBS
anyway. [3 like]
S Its very important to us, one of mine is over $150 a time. My sons supplement nutrition is not on script & is $40+ every fortnight.
[1 like]
K vital [1 like]
KKK I wouldn't be able to buy my medicines without the,PBS Probably would been dead years ago- [2 like]
KKK Sadly it shows just how expensive these medicines cost- heart patients asthmatics who have grave allergies and with Multiple
things like R/a fibro- etc blood pressure added up the drug companies must make a fortune - [2 like]
J Critical. I wish they would come up with a better system for tracking receipts for the safety net. It is a mess. In theory your
pharmacist could track it for you but there are some medications you can only get from a hospital. And they have set ups so you
can't pay at the dispensary, but have to go to an entirely different building which can be 300m away. And the cashier closes at 4.
After the two hour wait for the clinic, the cashier is shut, so you owe them. The PBS receipt can't be issued until you pay, which you
have to come back to do. Meanwhile if your pharmacy is shut when you need something you use another one. All these bits and
pieces have to be held onto and tracked. Very disability unfriendly. [2like]
LLL Just my anti-depressants are $52.65, then I have a mood stabiliser, asthma medication and blood pressure tablets. If I didn't
have the subsidy, on a DSP pension, I'd be living on tablets alone! [3 like]
MMM I have to regularly buy 2 medications: I'm hoping that this year I will make the pbs but in the meantime I'm having to pay full
price for meds as I work p/t and don't qualify for a health care card. [1 like]
A If i didnt have cheap PBS medicines, i'd be climbing the wall or walking the street talking loudly to my voices - good god they are
vital, and i feel for people who are paying full price for anything [2 like]
U with out the pbs people would not be able to take any medication, they would have to endure the pain. [2 like]
RR Without my medication I would simply die [1 like]
B I would not survive without it. Being on 15 different medications a day there is no way known I would be able to afford them
without the PBS. [2 like]
Z To me, the PBS is as essential as food. [1 like]
BB The PBS is essential to me!! I also have so many other over the counter medications etc., that I need to use for Sjogrens that is
not recognised under PBS because it is classed more as a rarer issue (not enough people to warrant it) so I am out of pocket with
expensive items I cannot live without using. My throat blood vessels actually rupture and bleed through excessive dryness.
I have to use sprays, gels, mouthwashes etc., to try and get more moisture and none of these are under PBS and I use a lot. My
ear drops and eye gels I can get under PBS which is great as that helps me a bit. If I didn't have that I would be spending more
than half of my DSP every month, actually probably more on medications and these other essentials...
I am annoyed at the moment that certain suppliers can change more for our medications than the subsidised scheduled amount. If
something is subsidised for us, it should be at the same rate for all medications.
W Before safety net kicks in my pharmacy bill is approximately $300/month, total. After it kicks in it’s about $200/month, total. So
it’s not a panacea - it doesn’t cover some meds at all - but it helps. [1 like]
NNN Couldn't live without it.
R It would be difficult to fund all the medications I need.
OOO We couldn't live without it
G not to mention families with multiple disabilities. I just about live at the chemist.
HH Sometimes I think I am working just to pay for my medications , am so glad for PBS and the safety net, once reached I can
have a breather - If I wasn't working and they changed the PBS I would have to die as I would not be able to afford the medication as it is some are not on the PBS, I could pay off a home with my current outlay
DD My meds aren't on the pbs...apparently I can live without vitamin e!
CC Chemo drugs are ridiculous costs and even with Mum's pension and PBS her overall drug schedule cost us $66 last week Tramadol on script is $33 on PBS and is ridiculous without. Those meds provide the hubby with the ability to work, so fi they were
not scheduled he wouldn't be able to work or do most other things. There are people also with chronic pain conditions or even just
people who have pain as a matter of course who live off panadol and neurofen which is an additional cost. G, like me, has six kids and if you have more than one child with a disability, you are the pharmacist's best friend.
MMM There are broader issues than just the DSP : how many people find themselves just below the PBS scheme every year? The
limit needs to be made lower especially if you require regular medication. I was just short this year so paying for medications was a
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burden. I am able to work part-time so I'm not on DSP but in general terms paying for medications, doctors visits and regular
physiotherapy impacts severely on a salary that just covers my expenses. I rely on these to be able to be in paid employment,
where I contribute to the Australian economy. It seems to me that there are many people like me with a chronic condition who
would benefit from extra medicare-funded physiotherapy per quarter and the ability to get free medications sooner because I'm on
a management plan. [8 like]
9 - DSP substantially reduces if you are a couple and are both on DSP. What effect do you think this has
on developing, sustaining or leaving relationships?
S Hornberg this rule is totally wrong and socially isolates PWD even further [3 like]
Q Ray I am single. [1 like]
NN Try living on $500-$600 a fortnight on Newstart, because you don't qualify, for the 20 points for a DSP [2 like]
PPP We have considered separating because we barely afford to live. [1 like]
QQQ Though rent or mortgage would be same you could have double the medications drs visits (if change Medicare $$$) this in
turn could have huge impact on people's Heath and safety depending on type of disability more costs for transport/taxis also
leading to more isolation etc with the cost of basic food meat meg vegetables could lead to poor diet = heart disease diabetes etc
etc etc [1 like]
EE Funny for years i have been marred but as my wife and famliy live over seas and my wife dont work i as am on the dsp pay too
send the kids to school with out help from no one and feed 5ppl and pay a home off ok [2 like]
R I'd also add the constant stress and strain on the family dynamic as well. Our children have missed out on a lot in life and have
been greatly impacted because of our family situation. [2 like]
S a persons disability doesn't reduce just because you find a partner. [3 like]
NN Yes but I live on my own and by the time you pay rent and bills, car loan, food, petrol, and medication, doctors bills ect ect [2
like]
S We have been married for 20 years, we have a 10yo child with Autism etc, I have multiple disabilities that have deteriorated in
this time. My husband folded his own business because he couldnt balance the hours and expense to keep the business going,
while looking after us. Yes it does put a strain on relationships to start with, coping with everyday stuff for yourself, let alone
financial strain on top of everything else. But some days you just have to sit there, take time out & say damm it all have a cuppa &
deal with it tomorrow. [1 like]
PPP The amount we need to live on doesn't reduce because we are a couple, we both pay rent, it isn't less it's a percentage of our
pay, we pay the same amount of bills and all than before, it still isn't enough to live on, we have double not half the amount to deal
with [2 like]
III If every person who works had their salary / wages reduced when they form a married relationship, there would be outrage, but
it's OK to inflict this rule on PWDs? [4 like]
QQ The DSP when you are in a couple is not enough and it's just not possible. Such a low rate ruins relationships. It's incredibly
heart-breaking.
QQ Centrelink tells you that you or your partner will just need to get more work - but if you can't find that other work there is no
safety net. It's appalling.
A The economic pressure that Centrelink imposes on couples, especially if one works and has an assesable income ruins
relationships, you cant contribute at all to the family money, the disabled person becomes a drag, and whammo, youre separated
Its economic eugenics!. [2 like]
A And bloody heartbreaking. [2 like]
A Economic Eugenics. And a way to force people to lie. Having sex is illegal, basically if you are on the DSP and dont tell
Centrelink [1 like]
QQ Basically if you have a disability and you're single you will be covered by the govt. You can go and study in the hope of
becoming self-employed, you can get the medication, dietary food and support aids you need. But if you're a person with disability
and you get married you become invisible. It no longer matters if you have those supports or not. It's disgusting. [1 like]
MMM on Twitter: #pwdadsp Economic & emotional strain will tear families apart= greater strain on welfare system. Lose-Lose
situation [1 like]
U they say two people can live more cheaply than one,don't believe it. [2 like]
H Not only does it deter people from partnering, it also places stress on those that do.
NNN Both myself and my husband are on DSP's and it's bloody tough! it's nowhere near enough to live on. We get just the basic
couples rate of the pension no more no less. They reckon it's cheaper for two people to live, well I don't believe that since I'm living
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it, we have double the cost of food, meds, doctors/ hospital bills and trips which adds to the cost of fuel etc. could go on. There is
nothing left over for anything that gives you quality of life, we're lucky if we have enough to live full stop these days. The DSP for all
of us isn't enough, be you single or a couple. As if our disabilities don't isolate us enough as it is we're then given this little amount
of money that only isolates us all further because there is never enough to do anything else. For most of us the DSP isn't a
temporary measure unlike people looking for work on newstart is supposed to be (although that isn't enough to live either) the DSP
is something that many of us will need permanently if not for a very long time, the payment should reflect what we need to have
quality of life not just enough to 'live' on. [4 like]
J It it IS cheaper for a couple than two singles living in separate homes. The rent for one home that fits two is not twice the rent for
two homes that fit one. The heating, cooling, gas, etc is not double for two people. The other matters? Yes. There are deficiencies
in a whole range of matters that cost people with disability more, so the more people with disability in the household, the greater the
impact. But they should be addressed separately. Spouses should not be taken into account when home help is offered, because
the contribution that the person with disability would make to household chores is what is being supplemented, not the ability of the
other person to do double. We need better coverage of medical costs, equipment, pharmacy and etc. if there are two people
needing a concession because of high water/gas usage, they should both get it. I just don't think the DSP should be the answer for
the shortfalls of every other program in place. It would never be accepted by the electorate, and would create another set of
inequities.
10 - If you get mobility allowance – does it cover your needs for fuel or fares, to places of work,
volunteering or education?
Q I don't have a car and I work to work. when or if I get a car things will change. [1 like]
EE I dont have a car i always walk every where [1 like]
Q But another point is that I have service through a disability accommodation service which affords me to do shopping once a
week. [1 like]
C No it doesn't cover all my travel expenses to work even with the NSW M50 vouchers which are half price [2 like]
K vital [1 like]
A i found mobility allowance hard to get, only oce have i recieved it, and been rejected a few times [1 like]
DDD It doesnt cover my costs and i only work 4 days a week, i drive a good 30-40mins each way everyday.. but its better then
nothing [2 like]
G it covers nothing. better supported through NDIS. [1 like]
People with Disability Australia Inc. (PWD) Discussion on Twitter that the mobility allowance should go towards setting up a
mobility scheme using taxi vouchers nationwide. Thoughts? [2like]
J Nowhere near. [1 like]
III Being able to get or not get Mobility Allowance is a major factor in whether I do Voluntary work or not. It effects my decision to
contribute to the wider society and community. If I am unable to get Mobility Allowance I become socially isolated. [3 like]
Z Yep me too, III. I get $20.90 DSP a week and if I didn't have the mobility allowance of $41, I don't know what I'd do. I'm constantly
getting cut off the mobility allowance for stupid reasons and so have to go to a Centrelink office to reapply. When I'm there, I get
told that they have no idea why I was cut off because I'm 'doing everything right'. [3 like]
RRR yes but only cos i use public transport instead of taxis [1 like]
SSS The mobility allowance doesn't cover much at all. Not to mention in my area most buses are still not disability access, and the
footpaths and curb cutouts are so messed up that my wheelchair often gets stuck on them. [2 like]
TTT I had my mobility allowance stopped because I could get on one tram!
HH Mobility allowance is a token payment only, I work and no way would it cover my costs. I cannot catch any public transport, I am
driven to and from work each day. As for going anywhere else well that is very hard as I cannot walk very far so it is all costly
private transport costs plus. I am grateful that I do get the small bit of help, something is better than nothing at all
K no way
DD I applied to Metro(as it was) and got an access travel pass for 5years...backed by a government run organization's OT who
confirmed I'm in a wheelchair and I need an owner trained service dog.
I applied for MA for my power wheelchair, I was knocked back.
11 - Have you ever applied for mobility allowance and been rejected? Why?
AAA Yes, because I was working for myself and not not an organisation who could say I was working for them. They refused a
statement letter from a JP. If the Government are serious about the review, they would make the transport really affordable. [3 like]
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A Thanks AAA, have you considered using an accountant? [1 like]
J The connection between MA and activities is frustrating. If the recipient is studying, and receives it for study, there is an ongoing
requirement to prove enrolment. Every end of semester can result in this strange dance of cutoff, documentation, waiting for
paperwork, reinstatement. It should take into account the actual process for people attending multi year programs, and not keep
rushing to a cut off. [1 like]
AAA I went to the Minister and he wrote me one eventually.
UUU How do you go about applying for mobility allowance ? [1 like]
A Hi UUU, its a complicated process. You need to gather evidence from a Dr, you need to prove you are doing something like work
or study or volunteering. Its worthwhile using a social worker to help. I had to get my accountant to write a letter to prove i was
carrying on a very small business. [2 like]
Y Yes 3 times and I was at uni and doing volentier work at the time , no reason was given so I appealed
12 - Do you think the mobility allowance needs to be improved? How? Ideas welcome.
G with ndis what allowance. it is scapt [1 like]
S to pay for a taxi to take you to work each day you are looking at $40plus a day how does this encourage anyone with a disability
to work. there needs to be some type of process whereby you get extra $$ when you gain a job to help with the extra transport
costs. [2 like]
QQQ Cab charge covering minimum 50% of cost for all medical appointments. Hospital bus available for gold coin donations (some
currently charge $10 per person one way) carers travel free on public transport (some already do but only if registered as Carer
what about it being one person rather than "registered" Carer [1 like]
O Yes! Boxes are not accounting for community work and those accumlationing hrs through sitting on committees. My role on
boards is a significance community contribution Despite setting up a program for visual artist, the role being under 6 mths my 10
per week are ineligible. I work, sit on a board, support local disability next work and attend 3 hr an art class a week. How is it that I
do not qualify for the mobility allowance. Yes forms need reviewing [1 like]
A I think it should be increased, but also the taxi voucher system needs work as well [2 like]
C I think it ought to be increased in line with the cost of taxis otherwise it may be a disinsentive for some people to work [1 like]
G when n NDIS is knocking make sure these issues of trnsport are covered and written i your plan [2 like]
A O heres one link that might help, you deserve the allowance https://www.welfarerights.org.au/ [2 like]
G i cant type on my phone. it will be leaving my hand very quickly [3 like]
A O and everyone, remember our professional advocacy team can help too http://www.pwd.org.au/
A O your art class is education [1 like]
P The adequecy of the mobility allowance depends on the mode of transport used… In a small car maybe it would cover petrol for a
week… BIG car/van definitely not! Taxi maybe one trip across town (with the use of a taxi subsidy voucher like we have in NSW). I
haven't travelled much on buses and trains, so I don't really know how much that will cost. But then, the issue is finding accessible
transport which isn't always available in some ares [2 like]
Q I say create an NDIS CAB Service. Create a member clause where on a two weekly basis you get 3,4,5,6,7 rides for free (you
get to decide that) that way the service keeps on running. [1 like]
P I was working four hours a week in my last job. Half my pay just about went on taxis to and from work [2 like]
O Art class is with Brisbane Institue of Art - community group, though employed as an arts worker and sales of art needing to be
declared by the tax dep. Oh the Leaders for tomorrow programe paid last years tuition it is not a registered education by centerlink
despite being able to gain credit for my cert II or deploma Go figure! [2 like]
T The mobility allowance MUST be improved straight away. $87 a fortnight minimum is only enough for 1-2 days a week work depending on where the job is in relation to where you live. This doesn't give me much of an incentive to work unless I am sharing
that wheelchairs accessible taxi with other people in wheelchairs who work on computers and live in exactly the same area as I do
and works for exactly the same company as I do I suppose. But it must be increased for other reasons as well, and not just for the
sake of looking for work, studying or working for at least 8 hours a day. It could be used for other things as well. Such as when I
might have to go down to Cerebral Palsy Alliance in Wetherill Park to get any additional services that I could benefit from such as
physiotherapy or occupational therapy or for when I might need a brand new electric wheelchair. [3 like]
RRR Volunteering is not considered by Centrelink to warrant the higher rate. I don't think volunteer work is always valued very
highly by some employers when hiring when a lot of people with disabilities do it to get experience. I think it would set a good
example for volunteering to be counted cos it would hopefully help validate it in people's minds as a legitimate source of skills. [1
like]
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H The M.A. is important, but unrealistically low. I know of someone who used to pay $50 p/d to get to and from work.
W Also many mobility allowance recipients won’t be eligible for NDIS tier 3 support, remember. It MUST be retained for those
people at least!
J It would possibly be enough if the transport barriers were not so ridiculously complex. Fix public transport accessibility, and the
remaining issues could be dealt with by MA. As a catch all, woefully inadequate.
VVV My two sons used to get the mobility allowance. It only covered 60% of their transport costs from home to their day programs
and back home. It did not cover any taxi rides they took. Their mobility allowances, which were paid directly into their bank
accounts, have ceased and the money is now sent directly to DisabilityCare. They now both have 100% of their transport costs
covered whether it is taxi or dedicated bus. It could not get any better than this.
13 - How would you be affected if the Government cut your DSP down to the Newstart rate (around $751
to $501)?
S couldnt survive! [2 like]
NN As I have stated I live on this now and it's HARD, the amount of things you have to get cut of just to survive, all because
Centrelink and Social Security Appeals Tribunal, see I didn't qualify for the DSP [2 like]
WWW This is a REALLY important question right now. The DSP for singles is $751.70 per fortnight and Newstart $501 per fortnight
so DSP folks what would this mean if YOU personally lost $125 per week: [2 like]
C One of the major issues is not recognising that there is additional costs for those of us living with disability ie taxis, medication,
equipment [7 like]
NN My fortnight wage from Centrelink is $560 which includes, rent assistants [2 like]
V No way we could cope [2 like]
NN Here is what is wrong, and people with disabilities have to suffer [2 like]
People with Disability Australia Inc. (PWD) What would it mean for you if you lost $125 per week out of your DSP? - tell us your
stories. WWW will be taking your comments directly to Patrick McClure Chair of Govt's welfare review for @PWDAustralia on
Tuesday in Canberra. [1 like]
WWW Over on my page from B - "It means a huge deal. How would I afford all of the associated costs with health/medical issues
that abled bodied people don't incur on a regular basis - prescriptions (I take 15 different types of medication a day!!!), regular GP
appointments (with a gap payment of about $20 per visit), getting to specialist appointments and the associated costs (x amount of
$). Also the cost of daily carers for personal care (approximately $90 per month). It is more than the difference between newstart
and DSP". [3 like]
Q I would literally have to die [2 like]
F Not good less money to live on [1 like]
QQQ I get a part payment as have partner that works (though on very low wage) but I know others that this would have a huge
impact on the health and many could finish up homeless. I could imagine the suicide rate would go up too [2 like]
NN They will suffer like Newstart people do, and what makes it worst is that I'm hearing that people on a DSP now are made to find
15hours of Employment, to cover the $125 cut back [1 like]
O I have no choice but to move in with a family member, [2 like]
WWW Don't Q - we all love you & care about you too much [2 like]
QQ Homeless. It's inappropriate for someone with my health problems to be living in a noissue share house which is the only thing
I would be able to afford if my DSP was cut to newstart rates. I'd have to sell all my stuff and go and live in a caravan and I'd be
scared all the time with the lack of security. I would no longer be able to afford my medication or dietary food and I would get really
sick, really quick. I also need heating and cooling or my symptoms are ten times worse. I wear compression clothing to help my
mobility - I would have to say goodbye to that too. It's very hard to even contemplate the idea of living on the newstart allowance
with disability - it's frightening.
N Shunting people from DSP onto NewStart would be a human rights and humanitarian issue as we apparently have the lowest
welfare payment levels of the developed world. • People on DSP have legitimate life and health/medical issues and the government
should be dealing with resourcing people out of these situations not pushing them into worse humanitarian crisis, deeper distress
and worse disability. The issue isnt money in a wealthy country that subsides mining by the billions. • The issue is what people
NEED in order to be rehabilitated and resourced to a place of better function where they can enact their capabiliites in the world
and are capable of contributing more. Threatening people with Newstart is not healthy for people already challenged in ways the
average Joe isn't aware of and which adds to their stress, distress and could further jeopardise DSP recepients mental health. • IT
COULD POTENTIALLY PUSH SOME PEOPLE INTO SUICIDALITY. Research states that a disability demands twice the level of
income of a nondisabled person to meet the same level of wellbeing as a nondisabled person (Palmer 2011). • SEE: Disability and
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Poverty: A Conceptual Review, Michael Palmer, Journal of Disability Policy Studies 2011 21: 210, DOI:
10.1177/1044207310389333
• How would further impoverishing an already challenged often times very sick person on DSP by cutting their welfare payment to
NewStart levels and giving them deeper hardship and more stress - actually help them to be more or do more? It wouldn't. It's
disgusting that we have a government that is so uninformed that it thinks it has some right to threaten and punish already
compromised people who in fact mostly (except for the few illegitimate claimants) need legitimate financial support and help that is
compatible with the costs of living and with a person being able to maintain a level of healthy function within society. This is what a
healthy society should naturally offer it's members on a platform of social inclusion. [7 like]
MM i would be hungry, and unable to pay bills [4 like]
AM I couldn't pay the bills! I probably have to sell the house and have no other option but to move into an institution…
The flow on effect is that I wouldn't be able to co-parent my child and institutionalisation would shorten my life span a lot!" [2 like]
U yes i agree with Q, no way people could live [3 like]
KKK I would lose my home- and I wouldn't be able to do volunteer work or use internet let alone pay power bills - I just became
single DSP due to partners death- I would end up homeless- [2 like]
G I would like them to do that to my eldest and see how DHS get paid for rent [1 like]
SSS I'm currently on Newstart allowance as I wasn't disabled enough for DSP. I live in a normal rental because I was removed from
the housing list. After paying what I can in rent I pay my bills and my groceries and have just enough to get me to and from TAFE. I
don't get to go out with friends unless someone pays for me, which is not a fun feeling. On the rare occasion that I have a bit of
money leftover I can buy myself some cheap books from ebay or put it aside to buy some clothes. Newstart isn't enough for anyone
to live on, let alone someone with a disability. [2 like]
W If I lost $125 a week I would almost certainly have to go without medications that I can barely afford now, thus making my health
situation deteriorate - potentially to the point where I was put in hospital. $125 week savings end up costing the government many
tens of thousands of dollars in hospital fees … some "saving"!!! [2 like]
O Wow! N you go girl! Well put. Fact and figures don't colour the reality the way you so well paints. There is a deeper human rights
issue here. Why are we even discussing survival when theres issues of living with dignity. The real issue is people with disabilities
as completely devalued by society. The problem we can't afford to fix, so scrap DSP and problem goes underground. Literately as
some are indicating. Most pollies are completely out of touch with our relativity [2 like]
Q Comparing the DSP and NDIS there is no question both are essential you cannot live with one of these services. Both are life
savers. [1 like]
MM i only have DSP no NDIS not quite dead yet lol ( i live in co op housing, so my rent would go down as per a set percent so the
funds to co-op reduce to burden the Coop finances) [1 like]
NNN My husband and I are both disabled, with various issues including mobility so we have extra costs for things like walking
canes, crutches (replacement tips, handles etc.) and my wheelchair as well as shower chair etc. plus we have to have a cleaner
come in once a week (vacuuming on one leg is rather hard). I also have to have our groceries delivered which costs us more, and
then there's all the medications we're both on daily and then there's the doctors and hospital visits that we have weekly (being
disabled is a full time job!) and we also have a mortgage so no rent assistance for us and because we're a couple we get less. If we
were to lose any of what we're currently getting we would literally have to sell the house and because we wouldn't be able to afford
to buy another one (can only just afford this one!) we would then lose our DSP's and be forced to live off whatever was left until that
ran out. Then we could reapply for the DSP and would have to apply for government housing, and with the wait times they currently
have we would probably end up on the street. We can barely afford to live now (lots of juggling) and when I say live, I mean survive
because lets face it, there's never any money left over to actually do anything that might bring some enjoyment into your life, like
having a meal out or seeing a movie, heaven forbid they give you enough money to actually have some quality of life! we don't
need cuts we need an increase and that's just so we can afford what we actually NEED now, heck we need help with our garden
but cant afford for someone to come do it and as a result our garden is so overgrown it's becoming dangerous just getting out of the
house! [2 like]
BB I would not manage at all. I was having Homecare for years but had to cut it because I cannot afford the extra dollars for that
because I need those dollars for medical things. I'd love them to come and see how I have to live now and tell me I can survive on
newstart. It just isn't possible. They know that most people on DSP have unbelievable amounts of out of pocket expenses. But this
is even worse for single people as we still have to same expenses as a couple. We don't get cheaper power, electricity, groceries
etc because we are single... In fact it is more expensive as a single person to live than as a couple.
Y NO-ONE can 'live' off Newstart now .. I think it's an issue that should be considered a breach of human rights! Yes I know there
are people in the world who are much worse off than me .. but not by much!! It's disgraceful the way governments treat the
disadvantaged in this rich country while they live high off the hog .. do Australians actually care? Thinking .. not much! March in
March 2014
AN There is no possible way I could survive....... [1 like]
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AO Pollies sitting on 300k salaries telling us we should live on 14,000 - a 'let them eat cake' moment. [1 like]
LL It would reduce my living standard to levels that would damage my health significantly [1 like]
BA We only just get by now! Would mean no more hyrotherapy, no more vitamins (and I NEED them as my stomach doesn't
absorb things and I can only eat soft food and limited type. Basically rice, mashed potato, pumpkin and poached egg, cornflakes
and 110 mth old baby food) and I need vitamin D because of my MS. No outings at all. Even though my outings now are just once a
fortnight with community transport. No more conditioning which for me isn't a luxury but a medical necessity as without it I can't get
out of be or function as my body doesn't self regulate its temperature.
So basically my life would go down hill and I would become sicker and probably end up needing to be in hospital for long periods or
full-time nursing care......
In other words I would probably just give up. So yeah...it would effect me BIG time. [1 like]
AP I wouldn't be but some of my relatives would be. It's not enough to live on but better than nothing, that's what I'd think. But if
they're going to do that perhaps they should make euthanasia legal first, some people would actually seriously consider that as an
option.
Y Are you serious AP? So, introduce euthanasia for all the poor people? It's been said before by a LNP stalwart!! ARE YOU
SERIOUS mate?? And it's NOT better than nothing.. how dare you speak in such a way!! You're either incredibly young or just
stupid .. or maybe both!! [1 like]
A I would have to move in with my aged parents, or with family. Sell most things i own. Go Bankrupt, be insolvent. Couldnt be a
board director at pwda, because i was a bankrupt. Any volunteering would go down the tubes. Couldnt afford my car, so would sell
it. Couldnt afford my bills. A boarding house or something similar would be on the agenda. [2 like]
J A your bankruptcy comment raises a very salient point. How many people with disability are unable to participate in public life
because of the systemic failures that cause them to break the law, without any intent? My bugbear is the city of Melbourne and their
drive to issue parking fines. They issue them even if you have the appropriate permit displayed, and just tell you to appeal them. So
you have a debt for something you didn't do wrong. And if you don't challenge it, or don't have the knowledge to challenge it, and
then don't have the money to pay it, then you have a bad credit rating. And so on. [2 like]
BC will have to move out of the rental I share with another housemate on DSP, but we can't afford to move out either - catch 22.
That is just the start. We already have had to forego the car, and contents insurance, next it will be selling off furniture (thankfully
my housemate actually has furniture that she worked damn hard for when she was fit enough to work, that she can sell). Once all
that is gone, who knows. And that is providing we both still receive the lower DSP [1 like]
BK be screwed more than i am now
BD My husband (also carer and in part time work) would not be able to manage. I dont know what other entitlements would go but
in my opinion its not only the money that the DSP gives (this does help though!) but also the fact its a pension card ie we get
discounts on everything everwhere from public transport medications drs apmts bulkbilling (some places) etc etc I also have a
severe hearing impairment and without this card i could not get "almost" free hearing aids. I had to get top up aids due to what type
i need. There is no way we could live on newstart - not sure what would happen to my partners carer payment though
BB DSP is everything to me and if T A garnishes our survival tool I will be very disgusted. [3 like]
14 - If you have been moved onto Newstart or sickness allowance in the past, what effect did that have
on your life? What would happen if the Government stopped your DSP?
Z I would have nothing and I would get charged full price for all my medication. I wouldn't be able to afford to do anything, like go to
the movies, because I can barely afford to now on the $20.90/week I current receive. [2 like]
DDD I need the benefits due to my ongoing medical and I would be struggling [3 like]
V I wouldn't even know where to begin if we no longer had the DSP. On going medical costs, bills, etc. [3 like]
NN They better start making out street in the city more saver to live on because that's where a lot of DSP people with finish up [3
like]
QQQ If they did that they would have to go back to Victorian times and build large institutions to house everyone ...god help us [4
like]
VVV They would have to build a lot more nursing homes for us [1 like]
WW People would be forced to look for work. In 'some' cases its not a bad idea..as there are alot of people on the DSP that are
physically able to work. Government should make it easier for people on DSP to do so, by improving infrastructure so that getting
from A to B isn't an issue. [2 like]
BB I would literally die as I would have no support whatsoever. I am not in a situation where I can work. I struggle every day with
just normal daily living. I think the gov't needs to go and spend a few days/nights with people on disability and see what life is like.
They treat us like it is a choice that we have! That is certainly the message Abbott is sending with we want to get the older people
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on DSP back into the workforce. Then man is clueless!! It suggests we want to be this way. He obviously hasn't seen the
devastation people experience as they begin to lose their financial freedom. What it is like to suddenly not be able to do what one
used to be able to do. Become isolated in ones own home as DSP only provides the very basics...
S Do they want to cause REAL harm to families! Even at the suggestion that they would take away our only support without
replacing it with something else. All this govt media talk is going to stress people out, there are a lot of people that have mental
health issues. [3 like]
G then we will all be on DHS door steps being relinquished [1 like]
O This suggestion frustrates me. Living in dep housing I see a whole range of abilities of those on DSP. I am all for employment of
pwd. but . . . those needing 24 hr care can not work! Will the government get off its backside and address the real issues of
discrimination and lack of awareness about disability in general? How can someone afford nursing home care on New Start. The
government is again simplification and generalizing in its bid to reduce expenditure. I think total restructure is need. [4 like]
RRR I would keep putting in job applications with no reason to think i wouldn't keep being knocked back and be financially
dependent on my parents... [2 like]
AR as DSP is the only support I get, I'd die [4 like]
G Maybe that is what it takes for all to come together and attend the door steps of DHS and govs with carers and PWD and say we
aint going nowhere so now what. [1 like]
AR quicker than is already happening [2 like]
QQ I would have no chance in life. As it is, on the DSP I am able to work towards self-employment. And I will bloody well get there!
Just you wait! But, if the DSP was stopped, well there would just be no future for me - I would be too sick to do anything or to go
anywhere.
T Just imagine that - stopping the DSP all together! I don't think I could survive - unless my family could help me financially!!!! This
would be very, very hard, because all my family live a long way a way from me. They have their own family and their own lives to
live. Some of them even have their own businesses to think of as well. I want the same thing one day myself. But I can't achieve
this if the Australian Federal Government were to think about stopping the DSP all together can I? I wouldn't be able to live
independently on my own either!!!!!!! [2 like]
A you would see me on the street begging [2 like]
N To me it is sick that in the 21st century in a first world wealthy and supposedly educated country we are even having this debate
and that such basic humanity is lacking that respects peoples basic needs and human rights. I believe that the French welfare
model see's SOCIETY AS RESPONSIBLE FOR THE WELFARE OF EACH PERSON IN IT? Might be a path Australia needs to
investigate. [3 like]
H I think that stopping the DSP would put a lot of people on the streets as beggers and it would put a lot of demand on charities. [4
like]
QQ I think I'm all ranted out CC but I'll give it a shot. I'm not finished treatment yet so if I lost the disability pension now it would be a
disaster as I wouldn't be able to take my medications anymore and so I would go back to seizures everyday, dystonia, not being
able to sit up for more than 20-30 minutes at a time, constant irritable bowel, unable to read more than 15 minutes at a time (if that),
my typing skills would probably regress (I went up by 40 wpm after starting treatment), I'd go back to forgetting faces, names, what
happened two days ago, I'd need my phone diary again because I forget where I'm going when I'm out (if I can go out), the lights
would get too bright again and I'd be back to only visiting with people for five minutes at a time maybe once every three months if I
was lucky - and never being able to go out at night, go to the beach, go anywhere really. I'd probably be back in constant pain
again of several different kinds with all sorts of rashes, and with the worst constant sugar cravings you could possibly imagine. I'd
lose my car which means I would not be able to get to uni which I wouldn't be able to manage anyway without my medications. I'd
be stuck at home with terrible uncontrolled symptoms, I'd have to give up my degree, and my future because really my only hope is
self-employment and I'm only two thirds of the way through the degree. And the isolation! Dear god, the isolation. Do you know
what it is like to have only my own company all the time?! I try but I am just not that much entertainment The depression and
craziness that comes with being shut in the house all the time is too much to endure most times. I'm afraid I didn't do a great job of
describing as I'm worn out now but it is so frightening to be so close to getting health back but to be also constantly at risk of losing
it all with just one swish of the government's pen.
Oh yeah and I'd get crap hair again. I know that's really superficial but I can't remember the last time before this that I had soft shiny
hair that didn't fall out in hunks. I like it. [3 like]
BB As stated in a previous post I would probably die as I would have no support. I am not able to work (although I never lose sight
of my dream of a cure in the future and a way to reverse symptoms) which would enable me to have the life I want.
QQ How about the instances of being forced to sign a form that says you are fit and looking for full time work with the threat of no
payment if you don't? That's what happened to me when I was 18. I was told there was no such thing as a sickness benefit and that
if I didn't sign the form saying that I was able to look for full time work I wouldn't get anything. How terrifying this was for an 18 year
old to not know if they would end up homeless or not every single fortnight. I was incorrectly on Newstart allowance and forced to
look for work for five years with furious employers telling me I was wasting their time coming in for an interview when I was not
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actually able to do the work. Five years I was put through this hell. I still have nightmares. I'd like to see that practice stopped. Very
much. [5 like]
AO The new impairment tables leave many disabled on newstart, and the idea that someone should enter a program of support or
some prerequisite before they are eligible for the pension is divisive and serves no useful purpose towards rehabilitation towards
health or wellness. Most people are very stressed out about finances and their health when they are applying for the DSP and
putting up more barriers to accessing the pension leads to more stress and further ill health. That some disabled are sick enough
for the pension and others should languish on newstart is also a disgrace, how can one pay for any treatment or medicine on
newstart let alone food and rent? The 15 hour a week rule is very unfair in that sense. If you are moderately disabled you also need
enough money to see your doctors, pay for medicine. [5 like]
AQ Some people need to learn basic maths and discover why it is almost impossible to work your way off income support,
especially if you have a limited work capacity. All you geniuses out there - what hourly pay rate do you need to receive in order to
be off DSP, with a work capacity of 15 hours per week? How many PART-TIME jobs are there that offer that pay rate? [6 like]
AQ DSP is part of the solution. But what is really needed is flexible, well paid work suited to people with disabilities, that is open to
people with disabilities. And that is NEVER going to happen in our pseudo free market economy. The only way to make it happen is
by affirmative action or reverse discrimination. I've written about that here: http://diss-ability.blogspot.com.au/2011/04/open-letterto-julia-re-dignity.html [5 like]
TT well if that happens i will have to live in my car. i can not pay rent and drs and meds .The fact is that The O'Farrel government
changed the workers compo so all these people have been thrown onto the welfare system one that was already under pressure.
All this to save the insurance companies money, when they were not suffering. seems double standards all round. as a result no
one will employ anyone hurt at work so what happens to them? YES you do have to disclose any injuries its a legal requirement.
they can no longer get a payout which would keep them off the welfare system for much longer. be honest for once.how can you
pay someone a pittance and all because they are not hurt as much as the next one or ill.Show us the jobs we are all supposed to
be able to do. the truth is that there are no jobs that exist for people that can only work occasionally or can not lift. people that are
sick can not perform to the level that employers want. and no matter what incentives you give to employers they will use you up
then pass you over for the next government handout. Mental health people are tied up with the Drs forcing them to be locked up for
lengthy times and how are they to be able to hold a job if they can not get out of these abuse ridden little institutions.they lose
contact with society because they are treated like criminals deprived of internet their personal phones etc. how can they even be
expected to be able to perform normally ? I am personally offended when i constantly hear it said well its tax payers money i paid
tax thank you very much so don't talk me down. Please get it right STOP the unnecessary HUGE TAX PAYER FUNDED
PENSIONS for POLITICIANS THEY DON'T HAVE TO SERVE THAT LONG TO BE ENTITLED TO AND THE LURKS THAT
COME WITH THAT free travel etc!!Tighten their belts please. that should save TAX PAYERS a huge saving.Governments can not
get welfare right. I remember when they opened up the mental institutions and put everyone basically on the street the nursing
homes filled up quite rapidly. They do not take all the elements into account. i call for governments not to be just able to change
things at their leisure. they must have to have more input from welfare organizations. The full impact must be realized.
15 - What would it mean for carers, family members and people around you if your DSP was reduced or
stopped?
O Can we also discuss the reviews of Carer payments?? [2 like]
Z My husband would get cut off the Carers Allowance. Plus it would makes us feel like we were on our own and nobody cared. [1
like]
QQQ Added stress...carers own health and well being seriously affected often needing care themselves.... breakdown of
relationships due to the stress.... [3 like]
Q Unfortunately all of my carers have lives my mother for example is retired she would refuse to help particularly at the fact she is
getting older and I sure as hell would not let her be active in helping me out especially at the fact that I am very much able to think
for myself. I would also have to start growing veggies. And at the ultimate end I would have move over seas. [1 like]
J Homelessness for us. [1 like]
VVV They wouldn't be able to afford to look after us it's already getting harder [3 like]
AA My two sharehouse mates will be out on the street without disability pension,i.e. homeless. With seizure, bipolar,legally blinded,
with very weak physical amd mental conditions because of their alcoholic problems of more than 30 years of abusing alcohols
overdose everyday while they are awake. They rely on alcohol because thats the only way they can calm down their mental
conditions nobody will understand. Even a shareshouse mate who is not on their shoes, term them as just lazy. In fact they are not,
One share housemate had a seizure about 10 days ago on the street and people who dont know about seuzure passed by or
stepped over him, but he was lucky he was hospitalized with the help of his friend who is also on disability pension who has also
seizure problem, living in the same sharehouse backing each other. Stayed in hospital after ER treatments for a few days, and now
back on our shared house.
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They are being misused by people around them ,because its easy to deceive people like them high on alcohol to get what they
want. I just saw two days ago, one deceptive guy, long story short, he got cash of 100 dollars for the work he promised to do,
before work started and didn't keep his work promise. Just one of many incidents I have seen in just one month of living together
with them, and their money is not theirs. They need a carer to hopefully bring their life back to normal as independent as possible,
need counselling, coaching, drug substance treatment, health, support for good diet, etc.
I wanted to leave the house initially, because I got a job 40 minutes drive away from where i live.
But I cant after seeing them what they are going through.
I wanted to stay this house to assist them for them to have healthy meal plan, guide them to shopping malls or Kmart or something
where can't usually go because of their panick attacks and their limited mobility,
So I came out with this idea of carer allowance which is really a pocket of money for me, I figured out Carer payment is for
someone who can't not work more than 15 hours because of caring people 24/7, as I'm going to study nursing, and also want to
help to make my own living with carer allowance,which is nothing, because if i move to other areas ,i will be working full time,
without having to worry about being late at work.
But I found out that money allowance is for someone who can not dress,eat,or move without care believe me they will be soon like
that without care for the rest of their lives they are early 50s, and their immediate children will be in trouble in their career, because
they will be having difficulty in assisting them at home, although I doubt they will.
They need immediate assistance in their disability, and they don't know how to use even a mobile, otherwise they will be soon
completely immobile, need meal assistance, dressing and undressing assistance, fall prevention efforts, toilet assistance, etc. Sigh.
[2 like]
AY I dropped of an elderly disabled friend of mine in the city on George St outside the Events Cinema as he was unable to get onto
a bus due to his fragile frame and disability and he couldn't afford a taxi, so I offered him the ride as he had won a ticket to see a
film. There was no where to drop off disabled people near the cinema so the fine of almost $400.00 now comes out of my DSP. It is
rediculous that with the facts that we have an aging population that not only are there no disable parking or set down areas withing
a very short walking distance to most of the city's theatres etc, but there are plans to make it a car free city. So that in itself shows
no consideration of the aged and or the disabled. A car, disabled and aged free city. Shameful. [1like]
G relinquishment? no one wants to but who is going to pick up the tab the government cut. the carer! [1 like]
VVV In vic we have a taxi card it gives us half price trips doesn't matter where we travel up to a certain amount per trip [1 like]
16 - What effect would it have on your relationships if your DSP was reduced or stopped?
AZ All financial stresses burden relationships, violence can be a result and increase. [5 like]
NN None Single [2 like]
V When hubby & I decided to marry 7 years ago it was significantly reduced anyway. But now it would cause even further stress
and worry. Which in turn had an impact on our health. [1 like]
AZ Those with psychosocial disability may be under community treatment "orders" which require them to purchase numerous
medications and attend doctors and chemists, on top of parenting responsibilities. Quite an expensive undertaking. [1 like]
AY With less money, the relationship would become one of anger, blame, resentment. Can the government afford to put the
disabled person in decent accomodation when their partner gives up and wants a divorce??????????????????????? [2 like]
A its very bloody hard, dating and disabled, and on the pension [5 like]
H Total stressful for all concerned [2 like]
17 - Can the government improve the DSP? What are your thoughts and suggestions?
C where to begin? [3 like]
CI think it shouldn't be means tested for people with significant and permanent disabilities [3 like]
Z Improve the means testing. My disability doesn't disappear if I live with someone who makes money. It actually causes me stress
because my husbands life would be much easier if we weren't married. [3 like]
NN EVERYONE on Centrelink benefits, should be on one Payment Single $800p/w, Partners $550p/w(each) [3 like]
OO What about temporary DSP for people who need more assistance for more than 12 months? [2 like]
H For those of us with profound disabilities we should be exempt from the income and assets tests in the same way as the BlindDSP is. My cerebral palsy interferes with me gaining and retaining employment every bit as much as another person's blindness. [1
like]
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NNN Well stating the obvious but putting it up a little would help greatly, as they don't seem to understand that people with
disabilities have more costs and if they don't want to do that, then they need to offer more services or improve the services on offer
already.Things like MASS and subsidized carers and other such schemes are hugely under funded and vastly inadequate. We
needed help with something recently and were told that they couldn't help as they had run out of government funding for the year
and couldn't do anything to help anyone until the new financial year. Another service which was of great help was the dental
scheme, that was axed, now we can't afford to see the dentist because we simply don't get enough money on the DSP to afford it,
which leads to other health problems in the long run. Increasing the DSP or funding to services would actually help improve the
health (mental and otherwise) of a lot of people which could in turn help some people get back into work either part time or full time,
it's hard enough dealing with a disability and all the different things it can throw at you without having the added stress about how
you're gong to pay for your everyday living expenses. People don't choose to be disabled so why should we be punished and
forced to live on such a low income? and for those who can work, most are never given the chance because of the lack of job
opportunities for people with a disability, the amount of times I was knocked back when I was able to work was ridiculous! We don't
want hand outs for the sake of it, we want to work if we can and if we cant we want and need decent income support, because if
what you have is permanent and you can't work then the DSP is not meant to be a temporary thing like newstart, it's for life.
A I wish they would comprehend the fact that Australia is one of THE most expensive countries in the world to live. Its qite ok, if
you're a miner earning $150000 per annum, or a corporate claiming everything as expense on the tax system, but it is really hard to
live on just DSP - and that means exist. I'd love to go on holidays or buy a Jetski, but will never happen on welfare. I wish the
presssure would stop from the media that we are skivers and bludgers [1 like]
18 - Your DSP is supposed to be reassessed every two years. What is it like being reassessed regarding
your eligibility for the DSP?
F Am only reassessed cause am looking for work [1 like]
DDD Pointless for those whose disability will never change or go away and becomes depressing to be made to feel like it will [2
like]
G If your disability is life long whats the point of reassessing. Money wasted that could be better spent elsewhere [2 like]
S My doctor of over 20 years, just fills out the form. Nothings improved (only deteriorated). He thinks its a waste of time (well in my
case). [4 like]
M in my daughters case she was born with her disability(CP) she has ben assessed/ reviewed on numerous occasions personally I
think in some cases its a waste of time as her specialists have written there will be no chance of improvement. therefore some
people need to be excluded from these reviews [3 like]
QQQ It can be very stressful for the individual and the carer/family and degrading depending on the "dr" centrelink employs....and
sometimes a waste of tax payers money...I had one assessment years ago asked me a couple of questions asked me to touch my
toes (which I may not be able to do even if I did not have a disability....and that was it [2 like]
WW H If you receive DSP due to a permanent disability what is the need for such frequent reviews? i dont see the point, not like
were going to get up and walk any time soon, lol. [7 like]
QQQ They should be able to make the assessment from treating drs reports in most cases [2 like]
NN I only have 1year and 1 month to go and I might be able to get on it if I have not found another job in between [1 like]
Z My disability is never going to get better. I feel that having to prove and reprove myself offensive. We shouldn't all just get
chucked in the same barrel. Disability varies. I have MS which is something I would expect those who make these decisions to
know about. Same with all other disabilities. Chronic illnesses like Polymyocitis is not the same as a broken back. I would expect
there to be knowledge and compassion. Not an assumption that everyone who is disabled is faking and trying to screw over the
system, which is how I constantly get treated. [4 like]
R Exactly, when the disability is lifelong is there a point to re-assessing the person? Particularly when their situation has worsened
and it is Dr's opinion it will remain either static or deteriorate further? [4 like]
BB I just ask, in my case, if they're got a better treatment (than what I'm already taking) for schizophrenia yet. I'd love it if one day
they said yes, because let me tell you, schizophrenia sucks [2 like]
S @ WW, Govt hoping for a miracle? thats what my DR thinks. [2 like]
OO Centrelink refused to include my chronic back and neck problems when i was assessed. Only put down my epilepsy and Knee.
[2 like]
BL Believe it or not, folks, even people with conditions caused by genetic difference, like Down syndrome, are reviewed
periodically. Many years ago our doctor wrote to Centrelink to assure them that the extra chromosome in every cell of our son's
body would never disappear, so regular reviews were unnecessary. [5 like]
BM About six years ago, Centrelink wrote to my son, who has Down syndrome, to say that he would have his DSP cancelled
because they claimed he had failed an assessment that he never had, was not asked to have and was not required to have
because he had it before 2005. They were very annoyed when we attended a Centrelink office to insist on a written notification that
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it was an error, even though they admitted verbally that it was. They said we should trust them that they would not withdraw it on
the date stated. Unlikely. My son had untreated severe sleep apnoea at the time, fell asleep while we were talking to several
Centrelink staff, and they either didn't notice, or were too cool to react. Even though he was snoring! His DSP was not stopped, and
so far he has not been re-assessed.
A i have my DSP assessed every two years. Its a trip to the doctor. More stressful if i don't know the Dr. If i know the Dr, its usually
a giggle. "Your arm healed Miraculously yet?". " Nah Doc". I have a paralyzed right arm and schizophrenia with depression and a
cherry on top. Usually a breeze at Centrelink too, all they gotta see is my hand, and watch me twitch in pain. uch more harder for
people with "invisible" disabilities. And Centrelink can be comple ****holes sometimes, but i find politeness helps. [2 like]
BE I went crook at them decades ago about the assessment every two years shit so now they only do financial assessments every
five years. And when I get their huge form I write where appropriate "Same as last time". I fill in the important stuff. And I never
have heard a squeak from them.
But I've been a crip all my life so I dare say they can see reason. And the only place crips like me are going (in their minds) is down
to death anyway. Pfft.
I also suggested that they do a "Universal Medical Certificate" so I don't have to keep running to the doctor every six months to
prove either that I am a crip or that I am a needy crip or that I am a "capable" crip.
It is all just sooo insulting I know BD.
BB Reassessing people with incurable known progressive diseases, and known permanent physical disabilities is absolutely
outrageously ridiculous!!! How is their condition going to change... What a waste of taxpayers money that is. Once again it
insinuates people are feigning etc. That they are choosing to be this way which is wrong. The process of obtaining DSP is hard
enough as it is.
Reassessment for only be for people with temporary conditions, or conditions that a cure may help them (if they meet criteria for
treatment) such as possibly cancer as a person with cancer may need DSP for a period of time as they go through treatment but
they may end up cured, so this type of reassessment is ok. But it should be up to the specialist treating this person to decide and
not some person sitting behind a desk with no medical degree.
Too many people who are clueless to diseases are making decisions with absolutely no medical degree or speciality in these
areas. These decisions affect a persons life!!
I can understand them maybe reassessing people with certain mental disabilities that are not permanent or treatable, but once
again that is also questionable as you have people with no medical degrees making decisions about someones life.
A person has to provide so much evidence from doctors, specialists etc., yet they allow some person, who does not know the
person, make a decision about that persons capabilities and pay no attention to what medical professionals say. It is wrong!!
19 - Do you have any thoughts on the frequency of these eligibility re-assessments?
G Depends on the disability. If you have a life long disability that effects you and you need a carer then why are you being
assessed. I find it strange how some are taken of the disability support pension but still need to have a carer. so whats next scrap
the carers pension too. DHS better have a lot of homes for everyone to go in too [6 like]
BF Have heard drs complain about writing letters for these assessments for people who have amputated limbs. The foot/hand etc
is not going to grow back! why does Centrelink keep wanting these letters and wasting time for everyone? [8 like]
BN I have no comments that are presentable to the public. [5 like]
G And autism isn't going to go away [6 like]
R Yes there should be re-assessment, but as to frequency I think it would depend on the type of disability. If when you have been
re-assessed and you have proven beyond a shadow of a doubt that your situation has not improved and will not improve for the
remainder of your life, then I question the point of doing so. [6 like]
A Its as if Centrelink expects miracles. Praise da lord! Mah foot it did grow back! [4 like]
Z If I get better I expect to be famous because I have found a cure for MS. [3 like]
QQQ Agree with all the above and your comments confirm we need a spence of humour to survive [2 like]
C in short waste of our time and our doctors time [3 like]
W The frequency of assessments already *does* vary by disability, as far as I know. What’s wrong with now? [1 like]
BB I think it boils down to if you have a permanent physical or mental disability that you met the criteria in the first place for DSP,
then why is an assessment required. It is not going to mysteriously get better unless somehow medical science finds a way to
overcome this. Same with incurable progressive diseases and illnesses. Until a cure is found, why are people being reassessed...
People only go onto DSP as a last resort when they can NO longer work. The government has to stop this mindset that we have a
choice!!!
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Assessments should be only for temporary issues, and/or diseases/conditions etc., with known cures. As mentioned in an earlier
post I think drugs and alcohol recipients should be reviewed as if they are not actively in rehab etc., why should they receive DSP if
they are choosing to continue to be an addict. I know even once they go through rehab they will always be an addict but it seems
they are being paid to continue their habits rather than helping them to become straight and/or sober and function again. Some of
them may need to remain on DSP as they may have mental health issues, but others may not. I'd actually like to know what the
statsitics are for the percentage of people on DSP for drug and alcohol related issues.
I'd also like to know the stats on people with issues like bad backs etc., as compared to people with incurable progressive diseases,
permanent physical and/or mental issues, or incurable conditions that render a person unable to work. These stats never seem to
be released even though we have to be assessed under different criteria.
If at some point a cure becomes available for a particular disease then it would be fair to reassess them. But the gov't would need
to bear in mind about permanent damage caused prior to a cure and the effect of that. Like for instance with MS, if a cure is found
tomorrow that isn't going to help us get better as the damage we have is done, and unless they find a way to somehow reverse that
then it would be different.
KK I have cerebral palsy I love when we get to the part of the form that asks is this condition expected to be gone within 2 years?
Ummmmmmmmmm nooooooooo [2 like]
AT Autism is another lifelong condition. Sometimes autistics are able to find work, but the biggest factor is finding an employer who
will accept the different abilities. Also, for many, it is not realistic to work full time. Sometimes that changes with circumstances and
other times people need to revert back to part time work. The other issue is that the people who assess conditions may say that
they are experts, but they often are not. I have recently had 4 psychiatric assessments. 3 consider me to be Autistic. One said that
he had not seen any evidence of autism in my early history. He asked my name, age, birth place and information about my parents.
Not one of those has any impact on autism! If I was relying on that guy for a review, I would be in big strife. [1 like]
AT Lifelong conditions should require one assessment.
K depends on the condition, if the condition is permanent whats the point of a review
20 - The Government is thinking about different rates of DSP for different people. What do you think
about this idea?
WW Great idea [1 like]
S Based on??? [2 like]
Z Who would be making these decisions? A pencil pusher at Centrelink? I have been asked on more than one occasion by them
'so, MS, how does that stop you from working?' [8 like]
BG Really, Good [1 like]
R What about if there is no particular box or criteria your disability fits into? What happens then? It's not as simple as that. Disability
is a wide and varied issue it is not a one size fits all response. It's been proven time and time again in relation to services offered
[5like]
KKK I think it's wrong- and more un needed expense- if you were assessed as being unable to work for more than two tears and
have disability and chronic illness then that's enough- it's not an easy fete to get a DSP- several doctors lots of paperwork and lots
of pressure - not at all easy- unlike most other govt allowances DSP is pretty strict criteria and believe me huge amounts of
pressure- no one in right mind wants to scrounge and scrimp every day of life if they don't have to [4 like]
F I had a job capacity assessment a few years ago left in tears cause i got accused of hiding behind the dsp so i didnt have to look
for full time work [3 like]
QQ The government is not capable of making these decisions. They are incapable of viewing our circumstances realistically. How
many times have I been told that if I can sit in a chair for twenty minutes then I can work? No - sitting in a chair for twenty minutes
ONLY means that I can sit in a chair for TWENTY minutes. And being able to walk 200 metres means I can ONLY walk that 200
metres and there is no telling when I will be able to walk another 200 metres. The government can not be trusted with these
decisions.
BG It is good for PwDs, who can do slove their basic task. [2 like]
C maybe a points system? [1 like]
BA I think we should get the same but there should be more help for those that need more equipment and medical items. [1 like]
O Bit difficult. But yes I think that's what I was meaning different types of DSP's but everyone should be paid the same and then
maybe medicare to assist with medical and mobility costs for those reliant on mobility aids also my niegbourd struggles with costs
of getting to dialysis 3 days a week no longer cover by state government in Queensland. Lots of different costs for different needs.
complex answers needed. [1 like]
BB Who are they to decide what rate we should be paid. My god if they were to lower the rate in any way people will literally die as
it is hard enough to survive now!!
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These people need to spend day/nights living with people on DSP and see what it is truly like.
W I think different rates would very effectively have us at each others’ throats 10x as much as we already are, which would be
extremely sad for the disability community. I don’t think it’s sensible financially or psychologically. [5 like]
Vicky I think it would be great for the people that have a disability, who don't get any benefits at all from government, I am an
amputee, and at this time I don't get nothing, no financial help at all. I have been trying to get this message out there, cause it is not
fair, and life is not fair!!!! [2 like]
H I support the idea in principle. The main concern I have is that is might encourage people to do things to make there disabilities
seem worse in order to be granted the higher rate. [1 like]
BO Don't see my Aspergers, anxiety and depression being cured anytime soon. Some days are better than others. [5 like]
AO This is trying to encourage division and infighting among pwds. We are one and the same, we are equal. Since when is
condition x worth $Y dollars more than condition z? [3 like]
BO I don't believe in people getting the DSP because of self induced disabilities such as drug or alcohol use.
G that is silly. induced need help and just as much help. as in another post. if the dont recieve help and DSP there will be more
money spent with preventing the crime that come with it. from ONE time drug you cn become mentally disturbed and have a
dissability for the rest of your life. most of the population have done somthing we should not have. who is to say ones life is less
important than another [1 like]
AO By that logic certain diseases are self induced, due to bad genes, lack of exercise, eating too much fat, sugar or meat, too
much stress etc. By your argument most conditions should not qualify for the DSP esp diabetes, heart disease etc [3 like]
J I can't imagine any basis for different rates that is actually income support. The DSP is meant to take the place of income for
those who can't work due to disability. If we had a proper functioning NDIS I would be arguing that every body, age pension, DSP,
unemployed, who is long term unemployed should receive the same rate. The only difference for me is duration. A few months and
you still have a fridge, clothes, car etc from when you were working. Not working for decades, or at all, and you are entirely
dependant on income support. For me that is the only difference. Medications? We should improve PBS, because not everyone on
DSP is affected. And etc. [4 like]
VVV I worked with a man who was an amputee and he was able to hold down a well paid job. Another man was a paraplegic and
went to uni to get a commerce degree and is now an accountant. Neither of these two men ever held their hand out for a DSP [1
like]
AC pathetic
BT It's a great idea. Some people have enormous medical expenses or other expenses like having to catch cabs everywhere
because of their disability, those high expenses should be recognised and DSP should be paid at different rates. I think the same
goes for Carer Allowance and Carer Payment, higher needs should mean a higher rate.
A VVV for how long did you know man with amputations, or the one with paraplegia.... a five minute chat at the water cooler
doesnt count, bet you knew nothing of their personal history and their struggle. [3 like]
A i have had work, and have to go back to DSP. Everyone is different. And things have changed since the 80's and mid 90s when
there were quotas in the public service. [2 like]
CC VVV that is a statement which reveals astounding ignorance about people with disability. For example, a bricklaying lecturer at
my workplace lost both legs below knee and had to return to his pre injury duties, he was not trained for anything else. He had to
drive three hours a day and then stand on bleeding stumps in a paddock teaching kids at a remote location. By the time our
organisation discussed adjustment, he had left, just exhausted. This is not an uncommon experience and especially when you
consider people who break their necks are often unskilled young men who are in the early stages of their life and not kids who are
predisposed to a career in tech. So you break your neck, and you may be able to Y - which in WA means you either go home and
let your mother wipe your arse for three or four years until you go to court, or you stay in an institution or rehab til then, trying to
adjust to a new life as a disabled person. If you have cancer or break your neck falling off a roof, you're not compensible and must
wait in line for funding with a bunch of others for support. If you knew me from a chat around the water cooler you would see that I
am a professional in a workplace but you would see nothing else, just as Stu says.
We go to huge lengths to preserve what is left of our dignity, and people see only the face we put out to the world. Or know that for
a bi linear amp you expend eight times the energy others do when they do a routine task like standing up or sitting down. Please
speak from your own personal experience rather than about things you don't know a lot about. [3 like]
AC It's fairly simple - they take it away, I will simply stop doing it. [1 like]
G what is the point to continue asking for help if is NOT availabe. our family..my husband asked for help and where did ir get him...
at the bottom of a cliff. no one gives a rats %&$%. I have no time for ignorant people who box everyone in nice neat containers as
in their mind thats how life and other should live..your way. stuff you! [1 like]
AO There is an enomormous amount of resilience that is required to live with a disability. Through the pain and tears, one learns to
push ahead. It is often only when one is faced with such challenges that this is developed. But not everyone is blessed with the
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resilience and perserverance gene. Should these people be punished? There isn't much help and people at Centrelink are far from
qualified to help. Doctors get tired of seeing you yet again when they don't have a cure! Why is it the pwd's fault that their condition
is not curable? [1 like]
AO Most people want to be well, free from suffering. It is in our nature and part of our evolutionary make-up. So people are often
desperate for anything to help them, who wants to be sick and poor? It sounds like you are reading too many News Ltd articles
about disability pensioners. [1 like]
J Some people work, despite significant disability, and they lose all concessions and etc as a result, and some can not. How on
earth would you quantify a different level of DSP?
J As for the comments, on a few posts now, about addiction. Firstly, it is easy to overestimate the supports available for people with
addiction issues. Most real services have a very long wait time, and require the person to give up everything else in their life to do
it. On which basis, how do they continue to pay the bills? I would also suggest there is a likelihood certain addiction services require
you to be receiving a DSP to qualify for support.
Secondly, addiction can cause significant disability, which may be secondary, but very real. And let's not pretend that the addict you
know from someone else who knows them is walking around saying "I suffered brain damage from my ice addiction and now have
that as a disability" or has even been formally diagnosed.
Then there is the question of responsibility. So, an addict who was sexually assaulted as a child is more acceptable than one who
wasn't? Does it matter? History can't be changed by wishing it so, what is important is what their capability is now, irrespective of
how they got here. That is the same reasoning we use for anyone else. If someone was drink driving and wrapped their car around
a tree, severely disabling them, would we say they shouldn't receive the DSP?
And then there is rehabilitation. What payment are they supposed to be on while rehabilitating? Newstart? So they can go to job
interviews between therapy sessions? And say what? I am a recovering addict, and Newstart made me come to this interview to
continue to get paid, but I have no work capacity at all right now.
Sure, we need periodic reassessment of those who have temporary disability. But in my view the money saved from that would be
so little compared to the harassment value of people who are needing support.
I reiterate my main argument on differing welfare levels, once you strip out disability costs, the main differential is duration of
unemployment. Not cause, or basis, or desire to work.
21 - If there were different rates of DSP, how do you think they should be assessed? Should this depend
on your disability? Should different issues come into the assessment, like support needs? category of
impairment? impairment tables?
S How do you put a price on a disability? [4 like]
AN Support needs and different cost of living in different places. Level of capacity also influences cost of living greatly...... [2 like]
Joe The government seem to b able to put a price on everything! It's that its not on a sliding scale - disabilities r so varied. My son
has cp is on a wheelchair is limited due to 'his body's condition' ...... His equipments needs r imperative and expensive - there's no
consideration for expensive repairs and ongoing maintenance for said chairs ......
and a common misconception by mainstream society is that u 'get given the required equipment and that 'the fix it fairy' just comes
by when ever needed [7 like]
W So many issues already with blind pension. Better for NDIS to cover costs related to disability not DSP - DSP is intended to be
income support, not disability support. [6 like]
Z It seems that when money is involved, the interpersonal relations go out the window. We are PEOPLE with disabilities. We are
not trying to short-change society for our personal benefit or vendetta. I think all of the above need to be taken into consideration by
a professional. Not a desk-jockey. [3 like]
Joe The thing is there r so many variables within a disability - my son has cp - spastic quadriplegia, (4 limbs affected) - as well as
speech issues (tongue a muscle)
No two people with cp r the same and the only people who truly understand this r treating specialists. [2 like]
A I think DSP should be a basic right for all disabled people, then proceed to NDIS where individualised needs are met. i dont need
the care that others need, and that is fair enough. Dont know what i'm gunnna do though if my Dad ever passes,and Mum, they are
so helpful. [2 like]
AY Let the government see the cost of medication, carers, treatments and transport to the doctors of the individual disabled person
to assess them and then lets see if they think that the DSP should be reduced. [1 like]
Joe AY the problem with the government is that they're not directly affected by this (or if they r costs r inconsequential as there
funds aren't so meager)
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They don't have to worry about things like - will they have enough money for petrol each wk to do what they have to do, they aren't
paying high rent, they don't need to choose generic or choose to go without if meds arent subsidized.
And let's not mention the quarterly electricity bills ..... U got to have electricity to charge the chair
I know that we r lucky here in Australia to have these payments but I also feel that on the other side of the government coin is the
pay cheques our members of parliament get (not to mention lurkes n perks) and how much does a retiring prime minister receive
every year after his her term of service, no matter how minimal that time was ......
Doubt they will ever do 'a robin hood' cause they will b 'robbing' themselves - in their eyes this is a hand out and the recipient shld b
happy enough with that (irrespective the cost of living) [2 like]
AT Jack If the impairment categories were anything like Workers Compensation, people with disabilities will be shafted. They are
structured to ensure that very few people can claim and the group who are most penalised are young people. [2 like]
DD WONDERFUL. So, as I'm undiagnosed and don't fit into a silly little box, I'll be told my problems don't really exist. I'll lose public
housing, I'll lose my wheelchair, my service dog will be re designated as a pet... [1 like]
The Roundabout EEEetplace This feels like a step backward, not forward.
S there are various levels of disabilities. i feel if a person is capable of driving a vehicle then they have more capacity than a
wheelchair user, but having different levels of pension would certainly create a lot of anger. i really don't know what the best option
would be. all i know is that when my spinal injury gets to a bad stage where i can no longer work on a casual basis, I'm in big
trouble.
BB Let me tell you the impairment tables are a load of rubbish when it comes to people with MS. These tables do not cater for
people with diseases like MS, Parkinsons etc., where our disease symptoms are constantly changing from day to day, sometimes
hour to hour. Things like stress and weather exacerbate our symptoms and can bring on new attacks. A person may be able to
walk a certain distance one day, and not the next. Or even after walking a certain distance then be unable to do anything else. Our
disease is so misunderstood in the general population.
There is just not enough education out there. People can look at us and think we look fine, therefore we must be. They have NO
clue as to all the hidden symptoms we deal with, most are on a daily basis once you end up on DSP. Most people with MS hang on
as long as they can to their jobs. Usually in the end the stress of trying to hang onto a job ends up exacerbating the disease more.
Then comes the stress of financial loss and DSP and the stress of that further impacts on our disease. It's not a pretty place and
no-one chooses to not work.
So you can end up being assessed by someone who knows abolsutely nothing about MS and they can look at you and think you
look fine to me. There was a world wide survey done last year from memory where the most common frustrating comment a person
with MS hears a lot is 'You look good'. This comment adds more stress and frustration to a person with MS as how we look has
absolutely nothing to do with what is happening in our bodies.
Also too the term relapsing remitting is bad in my view. It gives the opinion that one is 'better' when in remission which may
certainly be true earlier on in the disease when people are still working, functioning etc., but as time goes on we are left with
residual damage and never go back to where we once were. This pattern continues insidiously and unpredictibly. We cannot
predict what we will do tomorrow. We can have a plan, but it may or may not happen.
With MS we also suffer from terrible fatigue as the disease progresses. They know this is intrinsic to the disease, they suspect it is
because of damage to the neurons. We also then have muscle fatigability and then normal fatigue - so a triple whammy. Our
fatigue is often misinterpreted as lack of interest, or laziness because 'We look good! to them'. Fatigue is one of the most common
symptoms with MS.
The there are all the other wonderful hidden symptoms, brain fog, neuralgia (nerve pain), cognitive issues and the list goes on.
Each day it will be different. You will often hear a person with MS refer to having good or bad days. A good day means it's good for
us (not the same as pre MS and we were normal per se) but we might manage a few things. A bad day renders us in bed or unable
to function because pain is so great, spasticity is great etc.
Yet we have people assessing us who have NO clue to our conditions and how it truly affects us. We supply reports and letters
from the people who manage us who are more in touch with how the disease affects us and yet this is often overlooked because
'WE LOOK GOOD!'.
I personally know people at the moment who are really struggling to keep their jobs. Their employers are trying to push them out.
They are trying to hang on but the stress is exacerbating their MS terribly. No-one wants to lose their financial freedom. No-one
chooses DSP over working and it is ludicrous for the government to even insinuate this.
Stress is well documented as a means to exacerbate MS and the government wants to put us under even more stress. We have
enough stress trying to live our lives with this disease. We should not have to be re-assessed until there is a time of a cure and/or a
way to reverse the damage done to our central nervous systems, the very thing that keeps us alive.
I would not want a person who is not a MS specialised neurologist and/or my primary doctor making a decision that is going to
affect my life as they are clueless to MS. It should be left to our treating specialists and doctors to determine as they are the people
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who we constantly have to see. Who see how our disease affects us. Not some desk jockey with no medical degree or an OT who
is clueless on MS.
VV I also feel that there should be only reassessment for acquired disabilities or temporary disabilities but it is not needed for
permanent disabilities because:
1. It adds to the trauma and grief of telling your story over and over again and bexause people with a permanent disability have little
or no change to their disability status. It only adds to the paperwork a person with a disability or a carer / support person has to fill
out every year [2 like]
22 - What do you think about a temporary category of DSP for people who might be able to return to
work?
G excuse me for temporarily having an intellectual disability and autism. [7 like]
Z Again, it would depend on who makes the decision. Many disabled people have a relationship with their specialist so would it be
their specialist or someone who has a first look at a file and makes a decision? [2 like]
W I am entirely baffled by all this discussion of "temporary DSP". That’s what sickness benefits is - it’s for people who are unable to
work for a temporary period. It’s been around more than 20 years. How is it different from anything currently "proposed"? [6like]
C I do actually think it would be appropriate for people with temporary disabilities [1 like]
QQ Dreadful. There are a lot of people with illnesses like ME/CFS who are told their illness is supposedly "temporary" and yet they
still have it twenty years later. That's what this is really all about: being able to class certain illnesses as temporary so the
government doesn't have to pay. It's exactly what they say to get away with the newstart rate being so low: "it's meant to be a
temporary payment - it's not our fault if people fail to get work after the temporary period is over!" I suppose it won't be the
government's fault either if people on the "temporary" DSP rate fail to get well after a "temporary" period either! Would they be then
moved across to full rate DSP? I find that very difficult to believe. [3 like]
W QQ: That’s what happens now. If centrelink think your disability is temporary you’re told to apply for Sickness Benefits not DSP,
then after 2 years if you’re still on it you’re told to apply for DSP then. That’s what happened to me and at that point I had a CFS/ME
diagnosis. [5 like]
A They just rename the sickness benefit i reckon W [2 like]
AO This is another attempt to cause division among pwds, as is the attitude towards mental illness by these pollies. The
conservatives are really into their divide and conquer strategy. We need to remain united and demand equal rights and freedom
from discrimination and poverty regardless of the nature of our disability. [3 like]
AO The other thing is we are letting the powerful politicians dictate the discussion. Instead of setting the agenda and making a case
for a socially inclusive life free from poverty and equal access to all facets of healthcare and society for pwds, we are reacting to
their demands that welfare needs to be cut. [3 like]
A Well a graded system should be in place, for different needs, in my opinion. There is already that kind of system to an extent. I
really dont need HACC care, or a disabilty worker constantly like some other people, and that is fair enough. I dont need wheelchair
repairs. We all have different disabilities and abilities, and that should be recognised as much as possible.
AY When the government can find employers who are willing to employ disabled people who may need to take time off to get their
ongoing treatments or who aren't even well enough, physically or mentally to attend work everyday and then are treated like a
burden when they are at work, then are willing to pay them the going rate of pay, then that would be Nirvana. Add in people who
became disabled due to workplace injuries and lets see if they are employable. We need economist who know how to manage the
economy and leave the politicians to scew up their policies and not our lives. [3 like]
J Sickness allowance is only for those who have a job to go back to. Entirely different situation.
K Its something which could be considered
23 - How do you think the temporary category should be assessed?
Z It should be assessed by professionals who know about the disability they are dealing with, as well as understand that there is a
person behind that disability who wants to be there about as much as they do. [2 like]
OO so.. 2 of my temporary problems as assessed by Centrelink were PERMANENT as assessed by the 5 best surgeons in N.S.W.
[1 like]
OO And the last assessment by those surgeons was in 2002 and i can tell you nothing has improved. [1 like]
Joe The frustrating thing about assessment is that those who have genuine issues are being refused - whilst in some cases (that I
kno of) obesity has been considered a disability ........ I'm not understanding this.
Nor do I believe that assessment is consistent, it's very intrusive - especially wen said disability is 'an invisible one' - I feel that in
these cases of mental health for example the person undergoing accessments is highly scrutinized irrespective if treating psych's
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and drs reports ....... As in it is felt that the assessor is assuming that you are 'full of it' - which is t some can b resistant to the
process and it becomes very frustrating and humiliating for the individual involved - there needs to b professionals in said area of
disability in the room partaking in the accessments
H I think that a temporary income support program should NOT be labelled as 'disability'. I would suggest that giving a person the
label of 'disability' gets them believing that they are disabled in a negative way.
Secondly, it allows the Government to treat people with lifelong disabilities the same way as they treat the 58 year old who has
worked all of her life and now has a bad back but is too young for the age pension.
AA Carers are needed BEFORE frail people having all sorts of disabilities, are completely disabled at their young healthy age of
50s or 60s, hopefully for them to stand on their own. Not AFTER frail people having all sorts of disabilities are completely disabled
until they need meal assistance, mobility aids, transfer assistance, assist in toileting. They need counselling by the compassionate
professionals by the help of the government hopefully expecting they will stand on their own overcoming their barriers, like every
each individuals' disabilities on earth, but they need special assistance becuase of their special disabbility conditions. [1 like]
24 - What do you think the risks are with a temporary DSP?
G Again it depends on the disability. If for say your have cancer and going through treatment and unable to work but get better then
yes but if your disability is life long and you will not be able to change the way you were born then NO [1 like]
Z I think the biggest risk would be a wrong assessment given by someone who doesn't know what they're doing. There is always a
want to go for the cheapest option, which would mean no hiring of trained medical professionals. [3 like]
C there would be a number of risks. People could be wrongly assessed. Their dsp could be cut off without them realizing especially
for people from NESB and people with intellectual disability and psychosocial disability. [3 like]
Joe - am I wrong assuming that this is in relation to temporary incapacitation - accident, mental health ..... If so I think it could b a
good idea as it will reduce the stress during this time
- in relation to accessments, the people playing god - do they have medical/psychological backgrounds or r they but 'a glorified
pencil pusher?!'
Kel There is also the risk of your disability is all of a sudden deemed not disabled enough for the climate of the time. Plus there
could be an issue with people who have multiple problems including psychological including depression. .... that can be far more
debilitating than the physical. [1 like]
AO AIDS and epilepsy were not taken seriously in their early days. CFS/ME and lyme disease are not taken seriously today. It all
depends on what is acceptable at the time, this ia a dangerous route for pwds.
25 - Does the idea of losing DSP if you get a job deter you from seeking work?
G not if the wages are adequate. [2 like]
B I wouldn't say it deters me but if I had to lose the benefits I would be back at square one, like the issues you have already raised
and I have commented on. Paying full price of medication would probably wipe out a lot of my wages! [3 like]
KK It doesn't work when u can only work a small amount, u can't work enuff to make more than a dsp, and if u do work a small
amount u get about the same as u get money taken from ur dsp for working! Dammed if u do dammed if u don't [2 like]
A Yes. minimum wage jobs, dont cover basics like medicine [2 like]
AM Given the variable nature of the work I do an income it generates I'm very cautious about losing the DSP.
What happens if I get sick for a period of time and have to reapply for the DSP. I won't be able to pa y the bills during the delayed
assessment period that same standard. [3 like]
MMM Yes this would be good: when I started work in 2011, I needed a lot more physio than I do now but now taking more
medication without financial assistance. If you have to mentally or physically adjust to working having financial AND service support
such as physio, psychologist etc would be very beneficial [1 like]
QQQ No for many it wouldn't Some people with disabilities do have periods when in certain circumstances they could work
however their is a fear that when the "remission" period passes they then have to go through the nightmare of going to centrelink
drs etc etc to be able to go back on it 4 like]
H I've previously worked full time without receiving the DSP. But, I was earning a salary that was close to five figures. My wife (who
is also profoundly disabled) lost her DSP, our public housing rent was about $1,000 a fortnight, we had to pay for all of our
medications, our disability services insisted that we pay nearly cost price for our services, and I had additional costs associated with
work and commuting. I think that we ended up with about $50p/f better off. It didn't make financial sense to be killing myself with the
stresses of work for so little financial gain.
RRR I worry about ever having to reapply...
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26 - If you could hold onto DSP for 6 months after starting work would you be more likely to look for a
job?
QQQ No...but..if tailored so those who were in "remission" could re commence getting support when "remission" over with the
minimum of barriers I think some may [1 like]
Z I just want a job for no other reason than to not feel useless anymore. [4 like]
BB I think that is a very difficult question. There is no way that I could work a conventional job nor even have the energy or means
to. I cannot determine from day to day, even from hour to hour what my day is going to be like. I struggle just with keeping up with
things at home - basic things.
I am personally trying to study at the moment in order to be able to hopefully do a job where I can work for myself and determine
my own flexible hours. However, even to study is a huge task and is going to take me 8 years to complete, probably longer as
sometimes I can complete something and others times I can't. I am already behind at the moment because I have been very
unwell.
It all takes a lot of time but I find it is good for the soul to at least study something at my own pace when I feel I am up to it. But that
also is at the expense of even less things being done at home. It is a real catch 22.
Would I like there to be support if I were to achieve my dream eventually, yes!! I actually think the period of time should be longer if
you have a permanent condition as I really don't think you should have to go through the whole process again if you found you
were unable to maintain employment.
I also think people should not be disadvantaged should they choose to leave their job as opposed to being let go, as a person may
leave because they are not coping with working and also trying to maintain a home life.
There needs to be a balance as otherwise there is no quality of life and this seems to be an area the government does not even
consider. It seems to think if they deem you fit enough to work then you can. But they fail to look at the other side of life - ones
home life. If one is working and comes home and cannot cook, clean or fend for themselves then that is not living. If one cannot
have a social life because they are too exhausted from work, then that is not living.
However, personally I cannot ever see myself being able to earn enough money to fully support myself because I am incapable of
working the hours required in order to do so.
I think this type of question is more suited to the temporary disability side of things, not permanent or incurable progressive
diseases etc.
O Nope! For me its about community attitudes and their perceptions of me and my disability. I can't change my epilepsy! Money
doesn't motivate me unless you cut DSP and then I be camping at Parliament house until gov evicts me or reinstates the DSP! [3
like]
E I'de be more likely to look for full time work (currently studying and looking for part time) I worry that if I get full time work, lose my
pension and then decide its too much and have to give up the job...what then? my efforts would make me worse off. I don't expect
to paid DSP if i earn a wage but some kind of a guarantee would be good. 6 month "cooling off" period maybe?
HH get grip on reality where would the funding come from. I can barely walk, someone has to help me bathe and dress, drive me to
and from work (unable to use public transport) Yes I work for my money and would not have it any other way. I have a brain that
works and I enjoy the company of others and the people I work with are very supportive. What I lack in mobility etc I have in
knowledge so I help them they help me it all works out. I am a happier person for working instead of sitting at home looking at the
ceiling and walls unable to do tasks
A it would be a better incentive to work, but basically i couldnt afford my medical and pharmaceutical benefits, while working full
time on minimum wage [1 like]
A That i think is the important issue for me. As well as the fact i am too slow
27 - Do you feel you would be worse off or better off, if you were working?
Z Personally, better off. But I would have to be doing something I wanted to do. Not just 'a job, any job'. Everyone would be
different. I was diagnosed when I graduated from Uni (11 years ago) and so have never worked for an extended amount of time.
This has left me inexperienced. [3 like]
R The majority of people would love to work if they possibly could do so. The quality and amount of supports available to people
who want to work need to be improved. There is so much difficulty getting access to such services, the waiting lists eligibity ect.
Most people accessing the DSP would love to work is their health permits, it would give their life meaning and they would feel like
they were worthwhile participants in the community. [4 like]
G better off. But not in a disability sweat shop being payed $4 an hour. I wouldn't consider that fulfilling [4 like]
O As a Carer with a special needs child, working is very difficult. Limited daycare options plus the tiredness of the workday with
sleepless nights but financially what options?? Carers support barely enough to cover daily expenses. Working just for daycare
costs. I realise this is regarding PwD but parents of younger PwD are struggling too. I chose to return to work part time but am
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finding it extremely difficult to maintain supports for the children both in quality time, medical appointments and am financially still
struggling. [2 like]
BB Of course most people would work if they could but as G said not being under paid etc. No-one likes the fact they have lost
their ability to work. Lost their financial freedom and dreams!!!
It becomes a very isolated lonely world for a person on DSP. I would kill to have my old life back. I had so many dreams and so
many things I wanted to do, but it was taken from me just as many others have also had the same dreams taken away. This is not a
choice that we have. It is just how our life is.
We need the government to STOP treating us as if we chose to be this way. Sometimes I get so frustrated by the lack of education
out there on MS, and I think if only I could somehow magically let you experience what my life is like just for one day, then you
would see it's not how you perceive it to be. I would not wish this disease on my worst enemy, however I would love some people
to experience it for a day or two. Just as I would imagine other people with their disabilities feel the same way when being judged.
I have been abused so many times for parking in a disabled car park (which I am entitled to do so as have a permit) because I look
okay. They have NO clue that it expends my energy to get to where I am going and that I may really be struggling with spasms and
pain in order to get from a to b, which is generally on a daily basis. But because I look okay I must be. I have also been abused
because someone saw me walk ok but then next I am not. Hello - that is MS and spasticity for you!! Same things can happen to a
person with Parkinsons with their movements.
These same people that abuse me, which I am now immune to, have no clue that it has been years since I have done a full grocery
shop because I simply cannot walk around the supermarket in order to do that. No clue that I struggle to do normal things even like
standing for periods of time or things around the house which they take forgranted. But hey I look fine!!!
And that too adds to the scary part about having unqualified people making judgements on something that can affect your life and
well being as in assessments in DSP etc. If they request specialists reports and opinions, then that is what they should be basing
their opinions on. Not their own opinions as they are not medical professionals and most have no clue, including the government
about these conditions. We should be having Health Ministers who actually have qualifications in health care!!
W I don’t think I would be able to work, but even if I was physically able I would be unable for financial reasons - the value of the
government services which I am eligible for ONLY when I have a pension/healthcare card is far in excess of the maximum amount
of money that I could earn without being chucked off the pension. So I would be in the bizarre (but not uncommon) situation where I
could not afford to lose my healthcare card - I can’t remember the real numbers but say that $25,000 is the amount where you lose
your healthcare card but the value of the healthcare card in terms of services is $50,000. It ends up being impossible to ever
escape because your disposable income goes from $24,999 to $-25,001 the moment you exceed the threshold. [1 like]
BI My situation is rather unusual. I'm not currently working, but I do a lot of volunteer work. I'm not receiving any benefits, because
my partner gets an income that's just over the threshold for Newstart. I don't qualify for DSP, because I am assessed as having
work capacity in excess of 15 hours/week. I have been on Newstart in the past, much to the head scratching and consternation of
Centrelink employees!
I can and have worked - both as an employee and also self employed. However, for me it is a rather costly exercise in terms of
"burnout" a phenomenon common among autistic people, but little understood. In extreme circumstances, this can lead to
susceptibility to physical illness (that happened to me in 2004, and the cause of increased working hours then was _my_ choice!).
I find volunteer work has less burnout impact on me, and I have finer controll over my workload than with paid work, so I can
constantly fine tune it to meet my needs. The long term answer for me lies in the realm of innovative work arangements. [2 like]
H Socially: employment gets people interacting with others?
Financially: it is debatable. Especially when you consider what your time is worth (we only get one life: our time should be worth
something to us. [1 like]
A i got fired last Wednesday for being too slow. Thats it. I give in. I cant play the game anymore, i'll volunteer a bit.
28 - If there was one thing you could change about the income support system, what would it be?
AAA The attitude of those employed to do the assessment, or at centreline, compassion and information [5 like]
G stop letting Australian citizens live in poverty [7 like]
QQ And stop the gov pretending that a measurement for poverty is arbitrary: we have a right to food, clothing, shelter, heating and
participation. The government cannot take these rights away - they can only infringe upon them which they are currently getting
away with marvellously for people on Newstart. Do they think they'll get away with it for people with disabilities too? [2 like]
G And if you want people to get off DSP help them with re education and at the end of it get them a real job [2 like]
G find PWD strengths and work with those areas individually. [2 like]
MMM If everyone could find a way & place to work they would, especially if all practical support needs are met. Social inclusion,
high self-esteem and independence is what we all want. Changes to the DSP needs to be in tandem with greater services that
covers the needs of everyone's situation. Everyone's situation is different and even when some are more functional than others we
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all need assistance, whether it be all the time or some of the time. Everyone's experience is valid. As a Board member I take this on
voluntarily, trying my best to represent everyone. These forums are important so we can hear you all. [7 like]
29 - Do you think there are better ways to provide income support, than the current system?
G there must be but cutting it wouldn't be one of them [4like]
N Less support to the mining industry. More focus on PEOPLE and on the human aspect of society as an integration of people
within a society that supports the needs of each individual and stops labelling people as this or that, but rather see's people as
individuals who can contribute something of value. System needs a mindset makeover. Maybe if the pollies could live in poverty
with a disabiity and try out the system themselves for 6 months there might be a change in thinking. [5 like]
VV Cutting it completely only makes it harder for people with disabilities as cutting the pension is the easiest option for the
government [2 like]
Z There has to be. There are currently way too many hoops for people with a disability to jump through to get so little. [4 like]
BB If the NDIS comes to full fruition and not sold off as part of Medibank Private (which was what the gov't hinted at) that is one
start, but there always needs to be DSP.
The government has an obligation to look after the most vulnerable in society. They have to remember that NO-ONE chose to be in
this position. Yes, there are a few feigners out there with bad backs etc., on DSP but then there are some genuine ones too. But
the vast majority of people are genuine with genuine needs and the current DSP does not meet these needs.
We need to see more medications on PBS. We need to see all doctors and specialists bulk-bill DSP. They make enough money
from the healthy people, so why make it harder for the ones that need real constant help. This will help take more financial burden
off the DSP recipient.
We also need to see other areas for physical rehabilitation services, massages etc., to offer reduced rates for DSP and Old Age
Pensioners.
In all honesty the Medicare levy should have been raised for DSP along with the NDIS side. The NDIS needs to remain under the
gov't umbrella to give people the additional money needed for services that full short under current DSP, as not everyone requires
the same. If it gets privatised it will become a nightmare for all!!
G We are just not vulnerable enough [1 like]
BI The DSP should be one part of a more integrated and individualised system. I'm convinced more people with a disability can and
want to work, but the opportunities they need aren't there, so many are faced with having to make do with DSP or even Newstart.
NDIS initially showed promise but keeps getting progressively watered down to the point I'm not convinced it will amount to
anything.
30 - The forum is nearly over. Are there any other income support issues you want to raise?
B I really want to know about accessing funding NOW not a waiting list of five years to provide me with portable personal care while
I am working away from home. Does it exist and how to access it? [2 like]
S Bailey Kids with disabilities need more funding for additional services too, like therapies & specialists. [4 like]
AY More companies using disabled people in their ad campains to normalise our existence. [7 like]
VVV Butterworth Why do the states have different conditions and help all the states should have the same things in place [3 like]
Z The need for the recognition of the person who has the disability. We're not just a disability. [4 like]
AY Free legal assistance for the disabled as we cant afford legal help. As we still live in this world, we are still at the mercy of
needing legal help like others under normal circumstances, because lawyers don't treat us as being normal or worth helping. It in
their too hard basket. [2 like]
B Access to DES services when you are currently working (this is not me but it frustrates me) and you want to change jobs, not just
when your job is in jeopardy. The current rules imply that PWD should be happy to have a job and have no drive to want to improve
or right to change and get support at the same time [3 like]
AY Dicounted cab fares as a half hour doctors appointment takes a full day out of our lives in transport and waiting times alone and
an additional day to recover from that. [4 like]
AO Quotas in the workplace. Discriminating against the disabled at work seems mainstream, and I know people in the public sector
who think the disabled just can't work as they can only see the impairment. The disabled person may use a wheelchair or need a
few adjustments in the workplace, but they could be bright, diligent, productive workers. Combat discrimination with advertising
campaigns and quotas for the public service and disclosure of disabled worker numbers by companies. [3 like]
JJ Why r they trying to take away our assistance the libs I mean do they want a higher death rate because I won't b able to pay my
rent on how much they want to drop dsp to
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NNN I'd like to know why the government are targeting younger people on the DSP for reviews? if they think that will get more
disabled young people back into work then they're wrong, because unless you're able to work and the government is actually going
to do something about helping you get work then it's pointless. It seems to be just another way of getting more disabled people on
newstart rather than solving anything.
G not enough housing options for people with complex needs. respite homes with inconsistant staffing, using the persons diability
to file assault charges. not enough of anything. the gov just wait till the &%$%$ hits the fan. too late then!
AA I don't want to be cynical, but without really understandcing, communicating, caring real lives and real needs of each individuals
and people in the community, it's less than an hour's job or it only take minutes for treasurer and leaders to look into budget figures
and see the bottom line figures turning into black from the red like magic.
It is so easier than eating a pie. We don't have enough revenue, after 15% increase in executives and directors salary package
,excluding all other extra benefits, auch as all other housing, trip, mobility, car, their childrens' private school tuition assist, and all
utilities bills reimbursements, and after 2% increase in award wage of workers.
So we lay off people, cut reimubrsements or employee expenses, cut employee welfares, cut donations, burn outdated foods or
prodicts without givinc to charity, cut all other petty office staionay expenses, increase casual workers and subcontractors with less
than award wage,delay payment to vendors, cut everything without giving a careful look and giving a second thought on what this
will affect to the community, employees, people who are in needs and their families and friends, leaving them into a living hell for
them to bear on their own.
Please consider this, economic boost is not possible without people in the community.
Whether its business, politics, diplomacy, friendship, family or whatever it is relationship that really matters that will make our
community healthier hopefully.
Taking care of people focusing on the positoveness, not the fraud cases is what will Australia really rich and strong.
Thank you PM and alll leaders for taking a time to carefully consider this.
People who grumble on this systematic givernment support will never truly understand the natures of this supports, until they go
through same difficult situations, or until they become completely voiceless in the nursing home, or until they finish lives wirh their
wealths,or forgotten by the community when they have dementia or disability themselves.
Focusing on what we want to see in the community is really what the goverent should do,not the frauds case.
Those who think their tax money is theirs,i hope they will think again,as all they possess is given by their healthy body, brain with
knowledge, finance, family support and education which are not theirs at all. Be love and show generosity, and compassion, and
learn from people who are suffering.
We all need to humble ourselves really, not grumble,but be the one who wants to see the goodness in the society.
Well, this sounds like a reminder to myself to not to forget who more than often forget this simple facts myself, and grumble. [1 like]
BD What exactly is the government planning with this? I mean ive heard rumours but that is all? Or is that the point they haven't
decided yet? I heard about it going down to newstart for them to save money but as people have said the whole point is to cover
the extra costs associated with having a disability - something i never realised until i got one myself. I had one of those
"reassessments" done a couple of years ago it took 5 long drs appointments to fill in the forms plus ...going to Centrelink! I saw a
question on this and it was about how far apart you think the reassessments should be well ive been on DSP since 2007 been
through rapid and severe deterioration which the reassessment showed what did annoy me was having to reprove who i was
provide numerous documents like passport for both me and my husband AND all the drs appointments imagine if they were not
bulkbilled. I mean back then i could drive a car, struggled to get 20 metres in a manual wheelchair but COULD sit up!!! Now im
dealing with being completely bedridden cant access basic health services etc Im thinking if it took from 2007 -2011 before they did
an assessment when they originally said it would definitely be every 2 years. I found it incredibly stressful because i didn't know
how i would ever be able to work but they then decided not to bother me since! I dont have to see an disability employment agency
- i used to but found them completely useless. I never found out what they thought only that they were not going to go pressure me
anymore. I dont know about anyone else but i do what is required of me and thats all I dont find Centrelink approachable at all.
Maybe the government should look into that i mean...we dont fake our disabilities we either are born or acquire them some people
cant leave a bed let alone work...some people want to work just need support to do it we are all different! I also would have thought
that there are not mnay jobs for anyone let alone ones that are accessible etc [2like]
K Just h a call from another disabled person asking if the DSP was to be reduced to newstart level, any comments? [2like]
K objective poverty
AC that's cool, the government can pay for my child AND care for her.
AS Can they reduce our disabilities too? I was told no more than 7 hours of work a week and I'm totally voluntary to list with a JSP.
I've also been told I need to be fit to work more than that to register with a Disability Specific JSP that would assist me gently back
to the workforce. How does that work? I can register mainstream, but not through a service better equipped to help people with
disability? I was told no more than 7 hours of work a week and I'm totally voluntary to list with a JSP. I've also been told I need to be
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fit to work more than that to register with a Disability Specific JSP that would assist me gently back to the workforce. How does that
work? I can register mainstream, but not through a service better equipped to help people with disability?
I am studying after all, I don't plan on being defined as the person that can't hold down a job because she's suicidal or too tired or
sick, or is riding on the back of her child's Autism Spectrum Disorder. I want to train in something I can do, and that something for
me is psychology. I just need support to get through it.
I might still face that stigma like many of us, but why shouldn't we be supported to work if we can, and left alone if we can't? [4like]
Topics
Access to Centrelink
O Is accessing Centerlink an issue to explore here? When trying to complete boxes I don't fit into, I rocked up to my local Centerlink
officer at 11 am to be told to come back in the morning so I wasn't waiting for hours My disability is very obivious! My staff assist me
at 7 am most days. They will not make appointments any more I can't get through on the phone and return on am email is at least
three weeks, one reason I don't feel like fighting for my mobility allowance. Offices a very under staffed Really the government
either wants us to work or doesn't. Which is it? Mobility allowance info and forms not on the website and what about those reliant
on a guardian to complete paper work [4 like]
A Very good point O [2 like]
G Yes and when you do get through to centrelink they have to then put you on hold again to get someone who knows what they are
doing which takes another half to one hour [1 like]
J YES YES YES. Try explaining over and over that sure, that office might by closer in kms, but would require three forms of
inaccessible transport to attend. This one is a little further away but the train goes straight there. Followed by "but your designated
office ...."
And when you do get there, the lines are endless, and you can't even let them know you are there without standing for half an hour,
which not everyone can do. Toilets require staff to go with you.
There is no Centrelink in the CBD, so if you are lucky enough to find work, you have to take time off to go to Centrelink. [4 like]
O I think centrelink should have an appointment system for those who have mobility issues or need assistance on an intellectual
level. Its back to that one size fits all approach [1 like]
Z The whole system is a joke. I am tired of having to call them (sit on hold for half my life) to find out why I've been cut off for the
umpteenth time. And when I do speak to someone, I am treated like a lier. It's as if they purposly make it hard because they want
you to give up and not deal with them [4 like]
A Dont give up O, i'm applying too and i'm going to find a service that can help, some kind of social worker that knows the rules
better than me [1 like]
Accessibility of the Facebook Forum
W OK how can we make these online consultations more accessible for:
1. People who don’t have the ability to read and concentrate a lot at once.
2. People who don’t have the energy to be online for a long period.
3. People who can’t type fast and need more time to respond.
4. People whose schedules, for whatever reason, don’t allow them to be online during the short window of "activity."
???
Claims Processing Times
M I wander what is happening with new claims. I have been threw 2 claims and two appeals. I was asked for further records which
took my Dr 4 visits to complete. I have had reports of 3 Dr and they just call me so no I am not going to except these records. I
have to appeal again. Meanwhile I am living so bad. I cant work but I am forced to try and live on Newstart [3 like]
M I was put done with PTSD a mesh plate in my stomach a heart attack and scholeious of the spine. Sorry not right spelling. Some
days cant even walk or function. Then I see a scored no points I don't have any idea should I appeal again. Just before x mas they
said 8 hrs a week now 15. Not a thing has changed I don't understand [2 like]
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“Deserving” Welfare Recipient
EEE I would love to see how quickly Tony Abbott would triple the disability support pension, if he and his political friends had this as
an only income. The rate is utter poverty, and doesn't even cover the cost of the average rent in Sydney. For those who can
genuinely demonstrate a disability, and how it has prevented them from employment, (such as multiple knock backs from job
seeking and doctors reports) the DSP should be increased to at least $1,000 a week. [12 like]
ZZZ I agree totally. Keep fingers crossed it happens because it should. [2 like]
YYY It won't: Nurses at the Wollongong hospital earn $26 an hour, which, barring overtime, is $1040 per week. As far as the
government is concerned, pensioners sit on their arses all day doing nothing so why pay them more than just-barely-survival
money? Heck, none of the nurses I know survive on what they get! [2 like]
J And the comparison with pensioners is interesting YYY. Because if our idea of the "deserving" welfare recipient is based on old
age pensioners, and I believe it is, then there is a huge policy question to be answered. A person near the end of their life, owning a
home they paid for while working, and with some savings, is an entirely different proposition to someone who still have 60 years to
go, has children to support, and will pay a level of rent that old age pensioners never did. Nobody ever questions the entitlement to
old age pension. And yet the DSP entitlement is constantly under threat. Is it universally true that people of a certain age can not
work, and people under that age can? [2 like]
YYY Yes, the only difference I see between an age pensioner and a disability pensioner is the age pensioners don't have to always
pay rent (and some do still: nursing homes ain't cheap!) (this statement assumes they own their own house). J raises a very good
point indeed! [1 like]
J Yes YYY, it is about not making assumptions. Because often they are very wrong. [1 like]
W The "deserving crip" myth is incredibly pervasive. I've had several friends on the DSP who have said, even while they're around
me, that because they had worked for so many years they should get MORE income support. As some kind of reward for not
becoming disabled as young as me, I presume? I think the difference between "getting what you deserve" and "getting what you
need" is something we need to be mindful of - it's the latter that's important to me. [3 like]
XXX Be careful of "getting what you need" rhetoric too W - I heard some dick the other day speak of "of course PwD's should get a
pension, but you know, just enough to cover rent and basic food". Basic food. Because we should only exist, not live. Heaven forbid
we should want to have an actual life.
I think DSP and Carer's should both be average wage, taxable. If you earn on top, then the tax rates take care of it all (that is, you
don't "lose" your pension, but you pay extra on the income you earn as we have a progressive tax rate). And then we can all have a
little dignity, while at the same time not having to stress that we need to earn $150k before we can get off the pension to make up
for the loss of various programs etc... [2 like]
W XXX: Hmm, yes important distinction between "only what you desperately need" and a decent life. I don’t think expecting an
average wage is even vaguely practical so I wouldn’t personally advocate for that, but I understand what you mean. [1 like]
XXX I was going to say "minimum wage" but thought screw that too - it's still poverty for lives that are, by and large, really fricking
expensive. And BJ, as my carer, should be earning a decent wage for it, as should all carers who go above and beyond the
standard role they would otherwise take as parent/partner/friend/etc. I think either amount could be practical in the end, but a whole
lot of things would have to change first!!! Baby steps I guess... [2 like]
W XXX: Yes. I do think that so many of us are in desperate situations that it’s hard to even imagine what a "good life" would be be
I’m relatively lucky but still ... [2 like]
N DSP below poverty line. There is research that suggests that a person living with a disability needs double the income of a
nondisabled person to meet same level of wellbeing as nondisabled person. DSP poverty further limits a persons potential to
recover or ever enact their capabilities in the world. Imposes further suffering on the genuinely sick person. [5 like]
A i understand that minimum wages are very low, but so is DSP. We live in one of the most expensive nations on earth, and i wish
economists would take this into account, when talking about lowering minimum wages and and booting people off the DSP [1 like]
T It is very hard living on just the disability support pension when you have to pay a quarter of it in rent and a couple of hundred
dollars in other expenses such as: Electricity, Internet bills and telephone bills and bills for the Department Of Ageing Disability &
Home Care Services.
I mean I would like to see an increase in the DSP too because I also live on my own independently and this can be even more
expensive than sharing with other people because you are generally responsible for your own expenses. If there was an increase in
the pension, this will mean a life changing experience - one an individual could create on their own, with their partner or with their
close friends or relatives.
Also too, looking for employment too can be very frustrating too. Because I feel as though there is not that much of an incentive to
work because all the money or some of the money will go on travelling to work - especially without the Life Choices program as well
that my DEEWR Funded disability employment service provider keeps telling me about. If the Australian Federal Government didn't
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bring in the Life Choices program, we'll be all paying and spending money on taxi fares to and from work every day - depending on
how far we have to travel to work from our immediate local area in which we currently live in. [8 like]
A it's very frustrating [2 like]
C Have you applied for the attendant care program? [2 like]
D looking for employment is very frustrating i know as i am currently looking for employment just to help me pay my bills but as
soon as people see that u are in a wheelchair etc they turn u away which is disgusting i am desperate to work give us a chance to
prove ourselves [3 like]
T People with disabilities to me should definitely have more choice in what they want to do with their lives. Because ideas are
changing, technology influences this in a very big way, and by this I mean that people with disabilities like myself could develop
other ideas that could either lead to either a hobby or perhaps a business idea,
Also too, if there was a significant increase in the DSP, we would be able to budget better, and have time and money left over for
social activities with other close friends, relatives and family as well. Some of these friends live a long way from where I live at the
moment, and I feel as though that's the case, I feel very isolated here, because all my friends and family are on both sides of the
Sydney Harbour Bridge and I hardly get to see them from time to time because I live so far away from them.
Also too, times are changing too. Things are a lot different than what they let's say 10 to 15 years ago from when I first moved into
this unit in Westmead. Parramatta at one stage used to be like the second biggest city to Sydney at one stage in NSW, with a huge
Central Business District (CBD) - but now all of the big businesses that were in Parramatta are pretty much in the city or closer to
the city of Sydney. Parramatta, over the years, has become a place where there are now a lot of industrial jobs rather than
business or office jobs lately. Parramatta has one of the highest unemployment rates in NSW, pretty close to Byron Bay I would say
near the New South Wales/Queensland border I would say.
And I heard the day after my 39th birthday, I heard that on the "Today" show on Channel 9, apparently, Parramatta's population is
set to reach 1 million people within the next 20 years or so. And if the economy doesn't pick up here very soon, it'll will be an
absolute struggle to find any type of employment within the Parramatta local area in the not too distant future, I would say. [5 like]
N The stigmatization of people on welfare support needs to be addressed too. The them and us attitude. Everyone is a person in
our society and everyone has worth and value to contribute in some meaningful way. The mindset needs to encompass
compassion and humanity. [5 like]
DSP and Economics
H Whilst not confusing any gift for economics, it seems that pensions support the economy in a much broader sense. For instance,
if I was a shop owner, I would want pensioners to have money to spend in my shop. By reducing the spending compacity of a
sizable proportion of the community would have economic flow-on effects to the broader economic quite apart from the human
rights side. There seems to be a misguided presumption that the DSP is disincentizing people from working. Whilst there may be a
small percentage of pensioners for which this is true, it is certainly by no means universal. Stopping or reducing the DSP will not
have the economic effect of motivating people to enter, or re-enter, the workforce because for most of us it is simply physical,
socially and/or psychologically impossible. [1 like]
DSP and Eligibility
L I was quite scared when they announced a review of the DSP because as people who live with disabilities, we rely so heavily on
receiving the fortnightly payment. I have an issue with the term "Able to work" because a lot of people who have disabilities are able
to work, but there is a lot of discrimination in the work place for us so we rely on government benefits because we don't have the
same opportunities as other people to gain work and to actually stay employed. I agree that there are too many people on the DSP
who shouldn't be getting the benefits, but don't take it away from people who actually need it! [35 like]
S yes i agree, i am able to work as such as long as i have adequate lifestyle support funding to employ support workers to get me
up out of bed into my wheelchair everyday and i need understanding employers who are flexible. i am capable of working with
computers on a casual basis. i want to work but i need the right supports and funding in place to live my life independently [5 like]
L I'm the type of guy who gets excited when I get work, so excited that I put it straight into my schedule. [5 like]
DDD there is work places such as mine that do not discriminate and there is help from government places such as castle personnel
to find work but i still agree that it is hard for those such as myself that are disabled and can still work (with difficulties though) not
alot of help is there if you have a partner that works and then you end up sick and off work then have to live off your partners pay
and minimal from centrelink and still have to live and pay bills and medical requirements.. its to hard and government dont see it
that way.. [2 like]
AX The problem is BBB that they are yet again targeting people with mental health issues. It has always been difficult for people
with mental illness to get on the DSP and now it will be near impossible. When it comes to mental illness the people that need it the
most often lack the capacity to go through the rigorous steps to get on it, which is why people who shouldn't be getting it are and
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ones that should don't. As far as I can see this will not change a bit but perhaps get worse. It seems you need to fight for your right
to DSP which seems to be a complete contradiction in my mind. [5 like]
BU Well said L [2 like]
J I have never seen any evidence that there is anyone on the DSP who doesn't need it. But the reason why they need it is often
what L describes - entrenched discrimination. [6 like]
AX I have met some folk with whom it is arguable. I don't have any personal experience when it comes to people will physical
disabilities, my opinion is purely based on the support or lack thereof it offers people with mental illness. [3 like]
QQQ Some disabilities are "episodic" pain etc. and even more would experience a huge impact on their health if they did work
(exasperate their pain or if due to mental illness increase their stress levels leading to relapse) many do want to work but there are
few opportunities out their for suitable work and or flexibility. Also many employees treat people with disabilities like slates giving
them jobs none else wants and paying peanuts [2 like]
B I don't think we are in a place to judge who is entitled to it or not beyond our own selves. I met a lady this week that "looks" very
healthy and has severe pain issues and i would never have known this unless we spoke about accessing the workforce. [11 like]
QQQ Totally agree B [2 like]
J And B, judging a book by its cover demands that people go about their business looking as disabled as possible just so that
others around them don't judge them. Why shouldn't people have the dignity of looking exactly how they choose, without regard for
the way they are perceived by others? [11 like]
AZ People sometimes do not look like they are ill with a psychosocial disability, but struggle nonetheless. This means part time
work is possible even if earning a pittance, studying and contributing to the tax system quite well in the future. For others it keeps
them "off the streets" and socially connected, which we all know is good for mental health [5 like]
A I was/am frightened as well L Banks, really frightened, and my local MP and liberal party friends/hacks, couldnt see why i was so
frightened [1 like]
QQQ Agree 100% AZ ...flexibility of working hours job sharing etc are also important [2 like]
VVV I have always been aware that the government de jour could change the criteria for access to the DSP whenever they liked.
Since the NDIS was passed by parliament and the Liberal Govt got elected, they have been trying to do what they can to ruin it
(NDIS) by what I describe as back door tactics. They can't get rid of the NDIS but they can change the rules that say who can
receive a DSP which in the long run, prevents some people from accessing the NDIS. My first born son receives the DSP and has
qualified for assistance from the NDIS. With the help from his planner and a Geelong-based service provider, I have developed a
very intensive program that is designed to accelerate his acquisition of independent living skills. The sooner this happens, the
better just in case the government decide he has snapped out of his autism and severe OCD and can hold down a regular job. [2
like]
AK I know ppl who is on DSP and they shouldn't be... There need to be reviews regularly I reckon... [1 like]
A They are a tiny minority, AK [9 like]
VVV There are regular reviews for the DSP AK. My son had his review at the end of 2013 and is earmarked for another review in
five years. Even then, the Liberal government can change that too and make it every year if they think it will save them money. The
sooner the Labor government gets back in the better it will be. [3 like]
J I get quite frustrated by people who say there are definitely people on the DSP who shouldn't be, but they don't take action. The
rorters have been proven to be a very tiny minority, less than for any other payment. And to stop the "rort" debate, the simplest
thing is to dob them in. I don't know why that doesn't happen. [6 like]
VVV...and if you knew of anyone who was claiming a DSP and they shouldn't be you could report them. They would be asked to
come in for a review [4 like]
QQQ I am not against reviews per say however medical reports from treating drs specialist etc should in most cases be sufficient...
Many with disabilities will have little or no change to their status [5 like]
WWW Some facts on ''rorters" and "bad backs": The grant rates in 2013 (so, new people accessing the DSP) demonstrate that
psychological/psychiatric grants have been increasing over the past 7 years from 24% or 15,020 people in 2006-07 to 31.5% or
17,348 people in 2012-13), while musculo-skeletal grants have markedly decreased (from 30% or 18,807 people in 2006-07 to
20.7% or 11,414 people in 2012-13). [5 like]
VVV My second born son also receives a DSP and has qualified for the NDIS. The last few reviews he has had always end up with
the same result. The doctor always writes "ongoing and for life" but he was still getting called in for a review. So the last time this
happened I wheeled him in in his wheelchair and told the interviewer I would wait in the waiting room. As he is non-verbal, cannot
read or write and does not like strange places his distress was obvious. I got three steps away from my chair and was called back. I
received an apology and was informed that the file had been marked that future reviews would not be necessary. [3 like]
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WWW The REAL drivers are ageing the number of those on the DSP who are over 65 (indicating they have not yet moved from the
DSP to the AP) has grown since 2001 from 0.5% (3,005) to 3.8% (31,162). This means that the number of people on the DSP does
not fully reflect a ‘working-age’ population. It inflates the number of people on the DSP and deflates the number of people on the
AP, quite markedly; that is, if all of those over 65 were to have transitioned to the AP this year, the total exits to the AP would have
risen from 56,836 to 87,998. [5 like]
J They should just be moved across when they hit 65 surely WWW? Why would that not happen? Am I missing something? [1like]
WWW I'm told its a grandfathering issue .... [1 like]
J errrrrr as in becoming a grandfather? A grandfathering issue would generally suggest that there has been a shift, and people
don't lose their previous entitlements, and it gradually stops happening. But there is no loss of entitlements shifting from DSP to AP
is there? [1 like]
W I believe there are some advantages to remaining on the DSP rather than aged pension but I can’t think what they are just now...
[1 like]
J You get reassessed. You are expected to work. You are vilified in the press. You need medical documentation. Ummmm failing to
see benefits?! Maybe MA? [2 like]
AK Oh,I did report them, don't worry. They got in big trouble... [2 like]
WWW Check out page 13 of this from DSS - there are people over 65 on DSP - http://www.dss.gov.au/.../characteristics-ofdisability... [1 like]
AK And I am happy to work at "enterprise workplace" for peanuts to earn my keep. [1like]
AZ Even better a social enterprise developed, run by and the proceeds going to those who are a part of it. [4 like]
WWW I believe that if you don't apply for the AP you just stay on DSP, but happy to be set right on it. [1 like]
J Without wanting to seem harsh, it seems an important question to ask. Because the fact is they are going to receive welfare
either way, and if their presence on DSP adds fuel to the fire on the "blowout" argument, and they lose nothing by moving
across..... [1 like]
B I know when my Mum was turning 65 she was automatically transitiioned over to AP. [1 like]
WWW The "grandfathering" might be about when the automatic transitioning came in .... P is checking the DSP rules to shed light
on this! [2 like]
AZ The elderly post 65 with disabilities have higher expenses often than those without [2 like]
J Sure, but both pensions are the same rate aren't they? So it makes no difference. [3 like]
AK I thought DSP and AP get the same amount? My pop gets the same as me and he is 84' what is the diff? [1 like]
AZ The supports are often taken away if someone is not registered with Disabilities before turning 65 and that cohort is often too
proud to apply [2 like]
A AK are you just theoretically happy to work at a Australian disability enterprise (sheltered workshop) or you actually work at one?
[2 like]
WWW Yes but its about perceptions and people saying that DSP is blowing out. We need to know whether that's about "bludgers"
and rorters or whether some of the people on DSP are just people who would be on a payment anyway. [4 like]
W http://cpsa.org.au/index.php?option=com_content&view=article&id=224%3Aage-pension-or-disability-support-pension&catid=3%3Aincome&Itemid=45
A You wont be paid anymore the centrelink threshold of $157 a fortnight at an AED and usually substantially a lot less. Thats often
a 40 hour week, and usually quite boring work. You wont earrn your keep at an AED. I know people at an ADE eaning about $1.50
an hour. LOL. Earn your keep. Disability Enterprise i mean [1 like]
WWW OK. This graph from DSS breaking down DSPers by age shows what I mean - the top cream coloured bit is people over 65
on DSP. The 65 years and over age range increased from 0.5 to 3.8 percent over the period from 2001 on: [2 like]
O Not all disabilities are visual. Everyone can see I have CP but my cp is not dibilating enough to prevent me from working, even
though use a power chair. Uncontrollable epilepsy makes me unemployable, I found being an arts worker works for me. However
pain is a tW issue. Age and disability increase pain and fatigue, some people hide the pain well. I never understood how disabling
being deaf was, until I worked with some one who was deaf. In a world dependent on communication being deaf is so isolating - I
have an issues with people assuming we don't want to work. That DSP is a luxury, no movies tickets . . now I work a bit I buy cloths
but before that . . . I can make ends meet by I grow my hair and trips to beauty palar don't occur. Being able to scott round twon in
my chair makes a huge saving as I live in the CBD. [5 like]
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BB L you hit the nail on the head. What the government FAILS to recognise is that jobs are hard enough to come by, let alone a job
that accomodates and supports people with disabilities whether that is mentally or physically. I went from full-time, to part-time to
casual and really struggled as my disease progressed.
One of my last employers tried to force me into a position of something I was incapable of. I had not disclosed my condition, but
negotiated my flexible hours around chronic fatigue at that stage. I then had to disclose as I was forced into this position with what
they were trying to force me to do. This was met firstly by a long silence, then a swear word, and then the comment what the hell
are we going to do as you are a liability now... We won't be able to rely on you...
They then went out of their way, as many do, to ensure life got too hard for me. I also used to work in management when I worked
full-time and was told on several occasions to 'push people out' who were on workers comp or a liability to which I refused to do. I
was being pushed out on my then casual position. My response to other manager was often met by hostility toward me. I was
disgusted at the fact most places do this behind closed doors. I know they have to look at their productivity and profitability etc., but
they fail to recognise that these very people need their jobs and didn not ask for their disease, illness or physical disability.
Where the government gets this idea that employers will be accomodating is beyond me. There are laws in place to supposedly
protect people from this type of discrimination but they DO NOT work!! Employers go around things in a very sneaky manner when
they want someone out. People are told to ensure they stay within the law, so they often put extra workload on the person, change
their job description, do subtle things to put more pressure on them because they know they won't cope. It is wrong but that is what
happens in real life and the government is clueless to real life situations!!
They also fail to recognise that in quite a few circumstances employers will often pay people with disabilities a lot less money than
another person if they were to do the same job - unfair. Where is equal opportunity there?
I don't agree with your comment though that there are too many people on DSP that shouldn't be. I would suggest that there is only
a small percentage of people on DSP that should not be. A lot of these are probably under the old system as it was easier to get
DSP back many years ago compared to now.
I think the people who need to be reviewed are temporary recipients, also people with things like back pain etc., and those people
who are alcoholics or drug addicts as they get DSP. I think unless the person is attending rehab and counselling that we should not
be supporting these people on DSP - that's just my opinion and I base that on knowing someone in this situation who could easily
work now. They have been sober for a very very long time now and mentally and physically capable of work but yet on DSP. They
have told me most people in this situation are on DSP.
I think these people should be reassessed and provided with skills and tools if required to help them back to work. That they should
be on normal unemployment benefits but also supported in the sense to enable them to transit back to work. I was actually shocked
to learn they were on DSP and seem to obtain it a lot more easily than those of us with incurable progressive illnesses...
QQQ Well said BB
P I've found what I think might be the answer to WWW's anomaly in the figures under the Continuation, Variation or Termination
rules: "Work bonus for employed DSP recipients of age pension age. A work bonus may be used to reduce the assessment of
employment income in an instalment period. Work bonus applies only to DSP recipients who are: age pension age, and have their
rate of payment of pension or benefit worked out with regard to the income test module of a rate calculator at SSAct section 1064
or section 1066. Act reference: SSAct section 1073AA Work bonus, section 1064 Rate of age, disability support, wife pensions and
carer payments (people who are not blind), section 1066 Rate of bereavement allowance and widow B pension, section 1072
General meaning of ordinary income Policy reference: SS Guide 3.1.14 Work Bonus (from 1 July 2011)" Reference:
http://guidesacts.fahcsia.gov.au/.../ssguide-3.6.1.100.html
P I think these people may be of age pension age but work for ADEs [1 like]
J There are that many people over 65 working in ADEs? Wow [1 like]
AL I think the criteria for DSP as in to get it needs to be reviewed. It seems people who don't need DSP get it and the ones who are
legitimate lose out. [2 like]
AJ Well said, L!
A J, they work till they die almost. All their friends are at the ADE, for a start and often they work there for 30 to 40 years non stop.0
Some hit 50 years service. Most are people with intellectual disabilities. See I said ADE correctly! [1 like]
J Woo hoo, yes you did! And your explanation does make sense. Thanks for that. I still doubt their are ALL people in ADEs, but I do
get your point. It also raises questions as to how many people are on the DSP only because the wage they earn is so small it
doesn't do anything. If we want to talk about "bludgers" on the DSP, it would be fantastic to have a media team speak to an over 65
working in an ADE for so little money they still earn the DSP. Please anybody try to call them a bludger. Seriously. [2 like]
AC Well it's the darndest thing, L and the 33 people who agree with you, but no one hired you to make that call, so your opinion
means SFA.
AK A... I used to love working at sheltered employment as we do graphic design work on Mac.. But the last year been very dead...
Boss is slacking off and no work for us... I get the feeling this company going to shut down soon... After almost 20 years... The pay
is shit but that's life... I have started my own business now so I b leaving that job soon, I hope.
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J AC would you care to clarify your comment? Very confused.
AC Well you are saying there are people who shouldn't be on DSP. Who are any of you to say that?
WWW Do we really think having over 800,000 people with disability locked out of employment is a good thing then? And do we
really believe that none of those people could work given the right supports, attitudes and access to work? And that having that
many people locked out of spending, paying taxes and being part of the economy is right? I certainly don't think there should be
people in ADE's earning $1 per hr and on DSP. They should be paid supported wages and real incomes.
AK I earn just under $10 an hour because I threatened the boss I was leaving... She knows I am a bloody good worker! Sometimes
you have to ask for pay raise...
J Thanks for clarifying AC. I think we are responding to different things.
Yes. I think there are many many people on the DSP who shouldn't be, but not because they shouldn't receive a basic payment.
Because they should be able to access work if they are able to. The dignity of work, and everything it brings with it,
accomplishment, involvement, socialisation, etc are overlooked in any discussion of the DSP.
Are there people rorting the DSP? In all the reading I have done, the evidence says categorically no. The percentage is so small as
to be unimportant
DSP and Gender
Z At the moment I get $20.90 per week on the DSP. I am told that it so low because I am married. I can't help but feel like a bit of a
prostitute. It is understood that my life is funded by my husband and in return I provide wifely services. He only makes enough for
one person to have a fullfilling life. I don't go out because I don't have the money to do so. My husband wants to give me money but
if he does, I feel utterly useless. I am constantly having to prove to Centrelink that I am still disabled because they don't seem to
understand that MS is incurable. My health is going well for the first time in eleven years so I am trying to have a life plan. I'm doing
a lot of volunteering as work experience and preparation for going to University next year. This doesn't get recognised and taken
seriously. I don't know what to do with my life now because I get no financial support from the one place I thought I could rely on.
[7like]
Z If my husband gets a tiny pay rise, I'll be cut off and have to pay full price for all my medication. [4 like]
J This is a tough one for me. I understand the reasoning. If a person with a disability is married to Clive Palmer, I don't see why that
household needs financial support from the public purse. And shared financial arrangements are one very large component of the
legal concept of marriage. After all, that is what is offered instead of full gay marriage rights.
That said, the measure is probably a little blunt, and doesn't take into account the additional costs and expectations in such a
circumstance.
And the cut off and how it affects PBS etc is completely unfair. Earning $10 over the limit does not mean you suddenly don't need
your medications. That in itself creates a disincentive to work for those for whom it is an option. [4 like]
BQ Shared financial arrangements should always be a choice. Not forced by government groups. Especially at the levels of income
Z is talking about. [5 like]
F When i was married my ex hubby worked i got $290 a fortnight was still expectec to pay half bills, rent , buy food [2 like]
BJ This happens to my sister Z... Her husband has multiple myloema which is one of the blood cancers and ha cannot work. [1 like]
To continue... She works full time and he gets a tiny amount of DSP and so of course she has to completely support him and pay
all the bills!
It's just so unfair... There needs to be a new way to work this out when partners are terminally ill and that's what this is... There's no
cure just continual cost for treatment and medications. As you said you can have NO life when having to live on one wage! No
holidays, no social life... Nothing!! It stinks!! [3 like]
BJ When a person is sick there are so many extra costs that no one realizes and they aren't taken into account by Medicare or
whoever.?
When you are ill you will try anything to get better and this is where the extras come into it. There are treatments for side affects of
medications etc.
Vitamins for this and that and who wouldn't want to try them to try and have a better life!? For the most part though they are NOT
affordable unless you are like Mr Abbott and most other politicians!!!
No doubt they can afford the extras and live on way more than one measly wage!!! [3 like]
QQQ Fortunately I don't have MS Sonja...however your other comments cover my situation and how I feel... [2 like]
J Can you imagine for a moment how much harder it is for someone in either of these situations who doesn't have a partner? I don't
have a fully formed view on this matter, but I do have a lot of empathy for those who get frustrated by these conversations because
a partner, or someone to share both joys and hardships with, is their absolute dream. And would reduce their individual living costs.
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I am not attacking, or saying you don't have a point, just that there are a lot of perspectives on this one. And paying both individuals
separately would result in them being better off than every single ever, because of shared living expenses. [3 like]
QQQ Many relationships break down because of the extreme stress the families are under. I am reminded (though rare) of physical
abuse even death caused by the financial physical and emotion distress experienced by those living with disabilities and their
families [4 like]
Z I am constatly worried that it will get too hard for him financially. Also, it doesn't make me feel good knowing that I am the
financial weight in the household. [2 like]
BJ My sister has said quite often that they would be better off living separately and they certainly would financially!!
But of course this is quite unthinkable but I'm sure in many cases disabilities cause marriage/ relationship breakdowns purely due
to the strain lack of money puts on those people.
It's certainly not the life that we as hard working educated Australians expect or deserve just because we're struck down out of the
blue by some disgusting disease which disables us for life in one way or another!!
What life, it's NO life!!
It's so sad for many people but Z we know how you feel and do hang in there as something will happen around the corner to help
surely!!?? [4 like]
QQQ One of our problems is that those instigating changes to DSP have little or no concept of the day to day challenges faced by
those involved. Even if they had a member of their family with a disability they are in the financial position to be able to pay for
support treatment etc....can't imagine someone like tony abbot getting up several times a night then go off and do a full days "work"
[3 like]
J BJ, it is difficult to imagine how the costs of running two households is ever cheaper than the costs of one. Yes, there are other
factors, but to be honest, those who say they would be better off financially if they lived apart have never tried it. As a simple
example. It costs the same to cool my house for one occupant or seven. But seven occupants would all contribute to that cost. [2
like]
BH I have been in the same situation for the same reason. It was one of the main reasons why my boyfriend moved out. He worked
fulltime and paid child support as well as the rent. He was expected to be a house cleaner, cook and carer as well as work fulltime.
Intimacy and partnership was out of the question. Supposedly I was not disabled enough to get home help and yet I have an illness
causing severe disability and requiring several extraordinarily expensive meds and supplements to manage. If I was not on the
DSP I would have to pay full price for my meds which amounts to a few hundred dollars a month. It's pathetic and bad enough as it
is. [2 like]
J In terms of receiving support like home help I absolutely agree that people with partners or other live in relationships are often
disadvantaged. [1 like]
BI Those of us who don't qualify for DSP can be in an even worse situation. My partner is on a Comcare payment, due to a series
of workplace incidents a few years ago. This payment is not quite enough for us to live on. I've cut back almost everything I can
think of, even managed to be innovative and find ways to get some services for free. However, that income is also just high enough
that I can't even get Newstart, which also means I get no concession card, so I have to pay full fare for public transport, medical
appointments usually have to be paid for up front, because only concession card holders get bulk billed at many clinics. I also have
to maintain an ambulance subscription for the same reason (just in case an ambulance is needed - one ambulance trip and the
subscription pays for itself for more than 10 years). It's lucky that I'm generally physically healthy.
This situation exacerbates the burnout phenomenon I mentioned in another post, making even part time work less easy to obtain
and hold on to (and narrowing the range of appropriate jobs and employers). [1 like]
CC I am in the same boat re lack of concession status BI. I do not go to allied health appointments because I often cannot afford
them and my children are more of a priority. Who can afford ninety dollars, plus fuel, to go to the physio? Or up to $120 for a longer
appointment at a doctor's surgery whilst the doctor laboriously googles 'limb girdle muscular dystrophy' with one finger and whilst
you anxiously watch the dollars dripping away...medication and things like glasses and dental. My eyeglasses are old and crap and
it is $700 for a new set. Teeth are another issue for those not on public health. I still have some stitches grown into my gums from
where I just didn't go and get them taken out after an extraction. Didn't seem worth the extra eighty five bucks. [2 like]
A Heh. NSW state dental waiting lists for those with pensioner concesson is 5 years long. I'm going to pull out my teeth myself.
DSP and Housing
BBB Hi all What a great to be discussed, as a lot people the DSP needs to be increase in line wit h daily living, but not only that
you have electricity rent water medication etc, it is really for all people with disability to save for a holiday. it really annoys to see the
MP's and the public servants gets big fat wage. then when the MP'S they go out on a big pension...,,for what. stuffing the country
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up. and that's exactly what they are doing. We do need a increase3 in the pension, but for people that lives in DOH property's
whenever the DSP increases the rent goes up. [7 like]
H BBB is right about public housing rent. Once you earn above the threshold, for ever dollar you earn you lose 50 cents off your
DSP, 25 cents off your rental rebate, and you pay 15 cents in tax. Where's the incentive to work? [3 like]
DSP and Income Test
H The assets and income tests are also unfair where couples, like my wife and myself, are both profoundly disabled. If one partner
earns a dollar over the threshold, both partners' DSPs are reduced by 25 cents. By contrast, under the Family Law partners'
property is treated as belonging to the partner who earns the income or is bequested the property. The DSP tests are therefore
inconsistent with the general law. Besides, if I'm the wage earner, why should my partner be financially dependent upon me? What
does this do to the equality within the home? [13 like]
BV Do they take into consideration all the extra costs that a person with a disabily have..? [1 like]
H No BV. No costs are taken into consideration. Though, people who need to travel to and from work and who are unable to use
public transport, may be entitled to the Mobility Allowance. [1 like]
H Actually, I would even suggest that financially discouraging individuals from marrying (or partnering) is most likely contrary to the
Disability Convention. [4like]
Y S It is inconsistent with what is applied to couples not on welfare payments in many aspects of their lives. Bah! [1 like]
PP It is one reason I didn't get married in the end. I didn't want to be dependent on somebody else after living off my own money for
so many years, to have to ask them for money for this and that constantly. It's very demeaning and would cause a lot of problems
in marriages I would think. [4 like]
J And yet contrast that with the treatment of people receiving child support. Every dollar you earns reduces the contribution of the
other parent.
This may seem simple but the outcomes make no sense.
Let's say, for example, that there is a calculation that a child needs $1,000 a year. (Not realistic I know, but bear with me with the
example, it is too hard to find actual figures.)
These are the specific expenses of the child.
So the two parents are asked to contribute to that to the extent they are able.
But the fact is that the parent with sole custody, providing everything, and paying everything, is already at a disadvantage. Their
capacity to work is severely impeded, and when they do work it costs them in child care, take away food and other shortcuts (ie if
home you would go to the market, buy fresh food and cook it, for the lowest cost, but when working you have no time and have to
buy food already prepared in order for the kids to go to bed at a reasonable time.)
You pay, by default, every expense there is, clothing, shoes, uniforms, school costs, medical expenses, dentist. There is no cut off
at $1,000 that triggers a new calculation.
But if you can prove you have higher than average costs you can appeal.
And here are the catches.
To house the children you already pay much more in rent, not only for a bigger home, but to be able to get them to school and etc.
To drive them everywhere, to do everything, you incur a whole pile of extra costs.
And yet the minute you strive to earn more (thereby incurring more costs) the contribution of your former partner reduces.
So you are effectively incentivised to stay home, and be able to go to the market, rather than work and increase the overall
household income.
Apart from the inequity, because the ex partner can earn however much and the fixed idea of the cost of raising children prevails,
but what does that teach the children? What does that do for gender equality, given that the vast majority of sole parents are
women?
We have a system of welfare payments that has cut offs, reductions, restrictions. And of course we should make reasonable
adjustments in order to reduce the overall welfare cost. Those who have the means to support themselves should not be
dependant on welfare.
But too often the calculations behind the scenes are too ready to attribute independent benefit and eschew mutual responsibility.
And to chip steadily away at the ability to move towards independence.
There was a time in my life where I was able to quantify this quite clearly. For every $1 I earned, I lost $2.50.
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It was only my fervent desire to be able to skip over and out of the system altogether that have me the ability to continue working at
all.
Financially I am worse off for that decision. But my desire to escape the claws of administrators cutting at our income
retrospectively and leaving us nothing to live on outweighed the future ramifications. At the time.
Until we became homeless, and the fact I had an income at all excluded us from support. And not having an income would exclude
us from finding housing.
We need to question all the underlying assumptions around welfare support and income. Because they are based on norms that
are very questionable. [3 like]
H Hello PP. I am sorry to hear that the likely reduction in your DSP upon partnering deterred you from marrying. It is a truly cruel
public policy that forcing us to choose between companionship and not sinking further into poverty.
XX on Twitter: "If you are blind & get married you drop to married rate DSP even if partner doesn't receive it eg they are sighted" [2
like]
UU on Twitter how can I move to work if the income test makes my daily worse off if I get even one day a week". [2 like]
K absolutely correct, 1 day work = 4 days in bed
DSP and Overseas Travel
J Should there be a 6 week limit on overseas travel before the DSP gets cut off?
While I accept that there is an argument against people living overseas on the DSP, because that makes it IMPOSSIBLE for them
to work in Australia, what of the following?
a) Someone whose disability means they can not work at all. But they can survive more cheaply, and live with more dignity,
overseas?
b) Someone who travels for the usual reasons. To see friends and family, for tourism, for a short course. While the tourism factor is
unlikely to be high for people on such low incomes, the ability to go somewhere else is an inherent freedom we all have the right to.
Having a disability can make every single arrangement more lengthy, more difficult, etc. Is 6 weeks enough? [9 like]
Jon The only valid argument I can think of is to do with the current account... Someone living (or touring) in Australia and
consuming domestically "contributes" to the local economy. All other reasons are BS in my opinion... A review of the system is
certainly warranted... [3 like]
AZ What about funerals and family commitments
Cultural imperatives, such as those in the Aboriginal, Torres Strait and Islander populations [7 like]
BB I think it is wrong to dictate 6 weeks. For a person with a disability and on DSP, it takes us time to save up for a trip somewhere
and then we cannot do trips like other people. We are also doctated to where we can afford to go. It is actually cheaper to holiday
overseas than in our own country.
We actually need more time to do what others can normally do. I need to have rest days. I cannot do a normal day activities and
back up again the next day. Can't even do a normal day activity full stop!
I agree with the live more cheaply etc. I love my trips to Asia when I can afford to go because not only is it so cheap, I do not have
to worry about finding the energy to prepare meals, wash and iron clothes, clean etc., as that all is taken care of and I can actually
have more energy to do some things that actually bring me some pleasure. Just because we have a disability doesn't mean we
should not be able to have a quality of life.
But once again we are treated as if this is a damn picnic for us. That we choose to be this way and we are having a holiday on the
gov't sort of thing. So very close minded and out of touch the government truly is.
None of us asked for our diseases, illnesses, physical and mental diasbailities, yet we are treated like we have. That it is all our
fault and we can somehow change this. I'd be damn happy if the government ploughed millions of dollars into research to find cures
and a way to reverse these illnesses as I would like my previous life back!!!! But until there are cures for incurable progression
diseases like multiple sclerosis, sjogrens, parkinsons etc., that is NOT going to happen.
The government needs to turn its focus onto the temporary people on DSP. The ones without incurable progressive diseases etc.,
or permanent mental or physical disabilities.
J A, but if you DID go, would you not want to make the most of it, and not have a 6 week curfew? Considering the likelihood of ever
going again? [3 like]
N DSP should not rob people of their humanity, hopes, wishes, dreams and aspirations. If they are able to move around it could
facilitate them living a better level of life and attaining better wellbeing. Why should this be jepardised due to DSP?
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Kylie agree totally, it used to be 13.... should be same as aged pension i think, individually assessed for genuine reasons... [1 like]
AZ In the past the transitioning was smooth and slow in terms of earning percentage to loss of "pension" and it was a step back into
the workforce for me... others have such great difficulty managing the transition and require supports to maintain employment and
the particular issues with work expenses and commitments. [2 like]
J And that perhaps is part of the issue AZ. That it is still considered a transition. What of those who will only ever earn a low
income, and the costs of medications, transport etc are so high as to make working cost money. [4 like]
K if you have a disability and the possibility employment is low and you can travel then the 6 week limit should be waived, I
remember when it used to be 6 months, then 3 months then the current limit, this limit should be scrapped so you can have a better
life [3 like]
BS I was on DSP and when I reached the age of 60 was transferred (with no discussion) to Age Pension. Definitely not informed I
could have remained on DSP, Perhaps people could be made aware that they have this option. [3 like]
BB I tried to post this before but it wouldn't post so having to copy and cut into sections, so it will be in 3 sections. Taking me well
over an hour to write this. So please if you read can you wait until my last post before commenting so it is all together
If only the very people who jack up against these things could experience a day in some of our lives to truly know how it affects us.
Life is meant to be about quality and we already lack that in one shape or form because of our illness or whatever we have that
forced us into DSP. Some people have never even had the luxury, and that what I call working now a luxury, of being able to work
because they were born with disabilities that have never allowed them to participate either because they are severely disabled and
cannot, or society has not allowed the required adjustments to enable to this occur.
It's funny as I get really annoyed when I hear people complain about their jobs, or other social things and I think you really do not
realise just how lucky you truly are!! That you actually can do these things. But that they take these things for granted.
I must admit before my illnesses stuck their talons in more I didn't realise just how much energy expediture goes into standing up.
When one is healthy, one never even considers this. I am sure the powers to be do not even consider this. That it takes a lot of
energy for those of us who are lucky enough to still be standing or walking, to stand. Walking requires further energy. I also took
working a tad forgranted even though I was a real workaholic. I would sometimes complain but at the same time I loved it. But now I
class it as a luxury. I wish there was a proven magic pill to give me the ability to work, play etc., as a normal healthy person. I'd be
fighting to be first at the door.
I also get annoyed when I hear someone complain about an ache or a pain as I think OMG you have no clue as to what it is like to
live in daily pain. Most of us who do are pretty damn good at putting on a smiley face because we just have to get on with life the
best we can. But it wears you down further. It takes more precious energy from a person.
I think it would be fair to say that a lot of people when diagnosed with incurable disease, or end up suddenly physically disabled
etc., go on a massive learning curve and we begin to see just how many things one takes forgranted when healthy.
We begin to learn to appreciate the smaller things in life. That life is about quality, not quantity and to be honest most of us probably
won't make what they deem 'normal life span'. Some may. Some may exceed this. Some of us will have 'near life spans' which
seems to be classed as 9-10 years less than normal. Then sadly there are those who have very short spans.
This is also something the government has not taken into consideration. They naturally assume we will all live to a ripe old age. It
would be great if we can, if we are allowed a decent quality of life in order in order for that to occur.
So why shouldn't we be able to enjoy some quality of life, and if that entails a holiday, which isn't a holiday from our disease etc.,
but a change of place or space which is very good for the mind, body and soul as living with a disease/disability etc., can and does
become very isolating for many. Especially those who have little family, or family support etc.
A chance to experience something enriching and fulfilling, why should we be denied that. What if a family wants to take their
disabled child on an extended trip somewhere that has cost them a fortune, why should they be limited to 6 weeks. Why should
they have to be re-assessed for giving that child an experience that they will never forget. We all know positive experiences are
good for one's health.
BB I know someone who wanted to go back to stay with their family overseas for a while - a few months. It costs a lot to travel
there and yet they were denied extended travel (they had put a formal request in) and told if more than 6 weeks they would have to
be re-assessed - just wrong!!
Those of us who were fortunate to have worked all our lives until our diseases etc., took that from us, paid our taxes, and I know I
enjoyed work, as I guess a lot of you also did. Given we now cannot do what a normal healthy person can do, we need more time
when we go places.
Plus the fact that to save for a holiday takes a long time and we are more forced to go to places like Asia where it is cheaper. So if
we go somewhere, not only do we need more time, we also need to ensure that for the money we have spent we receive maximum
benefit in a way as we aren't likely to be doing it as an annual event.
Then there are people who have never been able to work, why shouldn't they be able to experience overseas holidays if they
choose. This isn't also just about the DSP recipient but also about their families and carers. Carers don't get a break either from the
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disability for the person they are caring for, so why shouldn't they be entitled to spend extended time away with if they choose to
take the person they are caring for away on a holiday. Change of place and atmosphere is good for people.
The people who complain forget they can take holidays every year and use them how they see fit. But they also have their health
(mostly, I know not all just talking general here). But they can carry out a normal days activities and do social things on top. They
get that opportunity every year - paid leave to spend however they determine it to be spent. They get to lead a life with normal
activities, we do not have that luxury.
I know there are people with disabilities that can work and want to work but there just isn't the structure there to allow this to
happen for most. There are not enough jobs and not enough proper support. We need to have a safety net here, where people who
feel they can work can do so with support from the government. If they earn too much for DSP, then no payments but not cut them
off, as in if something goes wrong and they can't handle it, they should not have to jump through all the hoops all over again to get
on DSP - as that is cruel.
But overall, there needs to be a section within Centrelink where people can approach a case manager, or a person within this field
of DSP and employment and say I would like to find a job doing this or this, and that person helping them achieve their goal. Not
the other way around of telling people they have to or we will cut you off, because a lot of people can't and it only creates more
anxiety because they would if they could, but they can't. Also there are so many other factors to consider here. Not only the work
side, but the transport side, costs for that person, the support in the workplace etc.
BB A person can't be expected to work under unrealistic circumstances like travelling an hour back and forth to work. Having to
take public transport etc. There needs to be more community based programs with local businesses to encourage them to employ
local people with disabilities that are able and want to work. That is the area gov't needs to focus on FIRST before even considering
its ludicrous idea of forcing people off DSP. Also within these jobs to pay proper pay rates, not slave labor rates as sadly this
happens to people - that would be demoralising for a person.
I don't think the government realises that people actually go through a real grieving process when one loses their ability to work and
function on a normal basis. It truly is life changing - a major life crisis for many of us because it is not what we wanted nor how we
perceived our lives would be and it is out of our control. It is like a death in the family. Some people never comes to terms fully with
this side of things.
They only need to look at a lot of peoples history to see a lot have worked all their lives until they got sick, or had an accident or
whatever the issue is for those of us who weren't born with their disability.
But to dictate to people about how long they can have a holiday overseas for is just wrong!!! I cannot believe that my friend was
denied her time to spend with her family and threatened with the re-assessment. Many people in Australia have family overseas
and they should be allowed to spend time with them if they choose. Also if people want to seek medical interventions overseas
which requires them to stay longer they should not have to be re-assessed.
It needs to go back to the 3 or 6 month ruling. I know people on the older DSP, before Howards changes, that are still allowed 6
months. One person was denied it and he appealed and took them to court and won. Yet most of us are on a 6 week ruling. as for
Old Age Pensioners, they should be allowed to spend their time wherever they please!! Quite a few countries pay pensions to
people who live permanently overseas, the UK is one of those countries.
The bottom line is we only have one life. We don't get to do this again. It is no dress rehearsal. We did not ask for our disability in
whatever shape or form it is, but we have it. If we could make it go away we would. But it isn't that simple. Yet the Abbott
government seems to think it is that simple. That if they FORCE people into work it will somehow fix these issues that medical
scientists have been working years on trying to find cures and/or reasons for why things occur in order to prevent them occurring.
Personally I think the government needs to look at spending money on ways to prevent diseases. Ways to prevent things that are
currently known to be preventable in regards to diabetes type 2 etc., where diet and lifestyle changes can make a huge difference.
Take a leaf out of the UKs book on preventative health measures and this will reduce the burden on the system in years to come.
Plus the government needs to pump more funding into research on other diseases to help find cures. These are the way to move
forward to lessen the future burden in regards to DSP. Imagine if they found a cure for MS for example. A way to prevent it. That
would help relieve some future burden on part of the DSP in the future. But because not enough funding goes into these areas a lot
of people will eventually at some point, as their disease progresses, find themselves having to apply for DSP. That is just one
example. Imagine if they found a way to know whether a child would be autistic and switch of a gene or genes in order for that not
to happen etc.
All these things could be possible in the future if money was put into research!! Abbotts proposal is nothing more than a way to try
to apply a BANDAID fix for his budget so as he can state 'look we did it' but at what cost to human life one has to ask.
We need to hold him to account on his comments that he would NOT touch old age or DSP on election night. He needs to find
other means, not attack the most vulnerable in our society, and that is what he is doing - attacking the most vulnerable!!
Sorry for the long rant but that's a little about how I feel about this. Thanks for reading if you got this far. I hope that others may also
share my opinion Hope it makes sense as I am quite exhausted now and it took me ages to type this and too hard to go back and
read it again. I hope I haven't offended anyone with anything I have written, as none is intended. It is purely my thoughts in regards
to this. My brain is tired and I have done the best I can for now to express my thoughts.
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BR I want to live and work overseas. It's my dream. Sure I get care services and depend on them but honestly feel trapped in
Australia I am greatful for what I get but my mental well being is at risk I rather not live then be stuck in one country all my life [3
like]
K lets consider at least 2 months as some people need to recover after a journey and also rest for a week before they can travel
back
DSP and Poverty
U people on disability pension are real people, they have to pay rent, electric, gas, phone, they need more medication than people
who are well and can go out to work,then there are other things that need to be paid like someone to mow the lawn, these things
become impossible for anyone in a lot of pain.and then you have food, what can you say about food,that is the most expensive item
but you have to eat so what ever is left BREAD AND JAM is about all you can afford, I voted Liberal in the last Election but I never
thought a Abbott Government would stoop so low as to try and make people with a disability Hurt even more, [4 like]
RR My husbands carer payment is just enough to pay our rent fortnightly, I get $570 & out of that I have $120 taken per ftn for gas
& electricity I have medication to pay for & I have to pay for postage & a money order at the post office for colostomy supply's , to
be delivered , petrol , clothing & there isn't much left for food I can't remember the last time we had red meat ! Thankfully my
daughter helps us out when we are in need ! [2 like]
K my dinner for ages has been 2 slices of toast, jam is a luxury [1 like]
HH on Twitter says: I already have to chose between my medication & food most months. Often I choose which meds to go without
#pwdadsp [4 like]
Z And that is disgusting. Disabled people don't 'become' disabled. It's not a choice or a privilege. It's stuff that deserves to be taken
care of by the society we are born into. I didn't ask to be disabled. It just happened. [3 like]
WW In this case medication costs need to be looked at and maybe a payment for those on meds come into play.. (not sure if their
is a subsidy/payment for meds at present). Again Government needs to make it easier so that people like this lady do not have to
choose between food and medication. Its appalling that she has to do so in a 1st world country like australia in this day & age [4
like]
S That just shows the govt are putting peoples lives are at risk. If that was a child & a parent, the govt authorities would take the
child away due to neglect! [4 like]
D our government need a wake up call I think [1 like]
WW Bigtime D, on many issues! [1 like]
D totally agree [1 like]
Z I hate being treated like I'm some sort of criminal for doing nothing but succumbing to an incurable condition. It is not our fault! It
is no ones fault! But it is something we need assistance with. [3 like]
A i too, hate being thought of as a scammer, scriver and bludger, they are labels that really hurt [2 like]
K I agree with EEE! I live in utter poverty. I had some help from CRS and they suggested I work as a muso to make some extra
money, well after my text return all that happened was that the ATO went through my last 10 years of tax and they are still pushing
for info from me. They don't seem to appreciate that I spend about 20 hours a day in bed because fatigue and pain. If he had a
relative going through my illness I bet there would be support services or as EEE said the DSP would be tripled. I am living below
the poverty line!!! $1000 a week would mean that I could live a bit not just exist! and I hope Mr Abbott would raise the threshold for
taxation as well so don't law back any increases! [9 like]
A its really bloody hard. They dont understand poverty, and keep comparing us to the poor bloody Africans in drought conditions...
Why? Because they want us to live like that too. [1 like]
DDD I am on the DSP and work on a contract part time and have recently had alot of time off due to illness, my husband works but
its not enough to cover all our bills and the minimal amount covered by the DSP i get due to my husband working is not enough to
get by, i am not able to afford a lot of the things required for my health as we dont earn enough but yet its to much for assistance
from government, i would like to know where is the justice in that. and though my illness/disability is ongoing and will never get any
better, i am at time subjected to reviews to make sure i am still disabled and not SCAMMING the system, each time my doctor
states it will never change but yet they insist. [5 like]
GG I'm the same...They just don't realise how expensive it is to be unwell... Especially with my daughter being special needs too... I
can barely afford to survive!! And like you am honest about my circumstances... I'm lucky as even though it sounds dramatic I fall
under terminal category so they don't harass me to be reviewed... [2 like]
DDD It's just not fair by any means [2 like]
A its not fair at all. the way DSP is structured, it breaks up families with economic pressure [1 like]
W Knowing what percentage of people on NewStart now have limited capacity for work would indeed be useful, yes. [4 like]
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EEE I think for those who genuinely have tried to find work, and demonstrate clear proof that they have tried to intergrate with
society, but have fallen through the cracks, yes I think a average wage is practical.
Things like the baby bonus, funding to private schools, and other things like that should be cut. Many years ago, I heard that many
who did get the baby bonus spent it on large screen cinema systems, home renovations, and etc.
There's many weeks where I only happen to scrape through paying the rent, groceries, electricity, and telephone/internet. In this
aspect i find that ones priorities are totally messed up, if they question why a genuine case of a handicapped person should not get
something better then the disability poverty pension.... sorry disability support pension. [5 like]
FFF Agree EEE,
W I think "genuinely have tried to find work and demonstrate clear proof that they have tried to integrate with society" would be an
arbitrary and incredibly unfair requirement, were it used. For a start, it discriminates horribly against those who are so disabled they
can’t do any of that stuff…
Not interested in fighting about it, I have other things to do, but putting impossible requirements down is not a correct solution. [1
like]
GGG I was put on DSP back in the nineties, to reduce the unemployment data ( and avoid Centre Link stress) along with a few
others, I rekon, I've worked part time ever since ..as has my DSP partner and a few friends/acquaintances...I'm thankful [3 like]
HHH have been knocked back for DSP for 2 1/2 yrs running because I only have an ABI, which Im told by centrelink that I may
wake up one day and be all "normal like". I've had 2x brain surgeries in 9 months with a possible surgery next year. I am on
newstart with med exemption, I have an appeal in the process but I doubt that it will get through. I cannot repair as fast as they
want as some dr's i have been requested to see are unaffordable, like a psyc, neurologist, my neurosurgeon. Yet if I was granted
DSP some of these dr's then bulk bill dsp clients. [2 like]
R This tends to happen when we get a conservative government. I am a Carer of both my husband and my son and have been for
over 20 years. Up until my husband had to retire because of his disability he worked 16 hour days often 7 days a week and my son
has a significant disability since his birth. I also have had significant health problems for many years. Is my situation special??
Hardly, but we have never wanted a handout or special treatment we just want a fair go. In between caring I have completed a
degree in disability studies that I have not be able to properly utilise because we have not been able to get enough support for me
to do so. I can assure ppl we are not living the high life and it is often a huge struggle being on the Carers payment and the DSP. I
would like to see a strengthing of help for ppl with disabilities who would like to re-enter the workforce and additional help with retraining. [7like]
UU The income test in particular penalises people for working. How can the Government complain the people don't find work if the
marginal rate of tax can be 110% before PAYE ($0.50 from my payment and $0.60 from my partner for each dollar I earn after
working 7 hours per week). http://www.humanservices.gov.au/customer/enablers/income-test-pensions [4 like]
N Government needs to look at COST of not properly resourcing people out of deep need and poverty to better function. If people
are not ABLE to contribute who they are and what they know in meaningful ways - society as a whole is loosing out. This is a cost
that governments fail to see or put value on. [3 like]
BB It is wrong and inhumane. The government doesn't seem to realise the cost of living with a disability is high.
They also don't seem to factor in the cost of medical and physical intervention that people need, especially of there are two people
in the one household on DSP.
Majority of doctors and specialists DO NOT bulk bill DSP. They do for Old Age but not DSP, and most people on DSP have to be
seeing doctors and specialists on a regular basis. They also don't factor in the costs of medications. Yes, people get it cheaper
under their cards, but has anyone really considered the percentage of their pension that goes out in medication and/or treatment
and doctors visits...
All doctors and specialists should be made to bulk-bill all DSP recipients.
DSP and Psychosocial disability
MMM People with mental health disabilities often experience problems in the workplace, including harassment. Under DSP
changes people deemed fit to work may lack confidence to apply for jobs that could create more anxiety; may be refused work if
they disclose their mental health condition or find themselves having to leave work due to harassment or other stress. How can
people in these situations experience help if kicked off DSP? [7 like]
G you are so right. My husband worked until they found he was Bipolar. they spent the next three years trying to get him to quit. I
don't know how he managed to stay on with the bullying and harassment. they even nearly killed him but he hung in until they
payed him out. [2 like]
G He never worked again after that though. It ruined him [1 like]
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MMM I know someone who had to take 2 employers to tribunals but in each case the employers were able to close ranks and make
the person look "like a nutter". [2 like]
G Yes unfair dismissal how does that work when the employer is working with the employment agency to say he isn't suited to the
environment. He was good enough at the job for three months doing 50 hrs a week. now knowing the disability which is why he
didn't want anyone to know he is given an extra month trial and I know no matter what he puts in place to make himself look better
ad improve his outcomes they will still dismiss him. [3 like]
C What would help?
G Having someone in his corner and talking to employer to stop it happening in the first place. [1 like]
AY Who is going to employ a person who has become disabled due to a work place accident. They wouldnt touch you with a ten
foot pole, would they? [4 like]
MMM J has a point but the real problem is our society's attitudes towards mental health: the "survival of the fittest" attitude which
pervades workplaces means that anyone different is seen as prey. These attitudes have to be abolished as does the attitude that
people with disabilities are a"nightmare for HR". I have no proof of this but the results are evident. Workplace counselling may help
during acute periods but there is a much bigger issue [4 like]
G that is right and who is going to re employ him if he has taken action against an employer [2 like]
A They dont AY, i lived through that, you become an insurance risk [3 like]
WWW I've seen work that says that people with psychosocial disability often find jobs but the real challenge is retention - people
being able to develop coping/resilience skills [3 like]
G and how will he get another apprentice when the first thing they will ask is why were you only at the job for four months. [1 like]
G I spoke to the manager and asked but isn't having the DOR program beneficial and an incentive. to which the reply was NO we
had Karingal here the other day yada yada yada not interested [1 like]
MMM So it seems we have to get into each workplace and educate people EVEN MORE and continue to add pressure for change.
We need all of you to do that and we have to do it in a way that appeals to the bottom line. [1 like]
AY I think that the only thing that has to change to make disabled people feel validated firstly is for the government to treat us as
vauable people in our society and that means increasing the DSP, not decreasing it. Life as a disabled person is difficult enough
when you can't afford ongoing treatment and medication let alone being able to keep up your appearance with a haircut or new
clothes or being able to afford to go out with what family and friends you still have in your life without feeling like a burden when you
can pay for your own meal and taxi. Disabled people are treated like the forgotten war veterans that returned from Vietnam. made
to feel ashamed of themselves and of no value. Again, it takes the government at the time to step up and make them an integeral
part of society. Not even our Paraolympians get corporate support when they return having won more medals that our other
Olympians. Shame on the government. [5 like]
CC G can you explain your son's situation? I think it's really pertinent here. Because he is a lad who is working really really hard
and doing great things but is being penalised via societal prejudices. [4 like]
G I have tried to explain to the manager but he was the one who said Karingal were here last week wanting to know if we would
hire yada yada are his words. [1 like]
CC I'd like to raise an additional issue re this MMM. The NDIS specifically excludes early intervention for people with psychosocial
disability in their eligibility criteria, so there is no support available prior to being deemed 'unfit to work'. Then you're in a job where
you don't disclose and therefore are not supported, or just in a job where people are prejudiced against you and therefore you are
not supported - there is nothing like mentorship programs at work or anything 'built in', it's all 'go for a two hour counselling session
and it will help you, twice a month'. Which is not ongoing support in the same way that a person with physical care needs has...and
we wonder why there are so many people with mental health differences on the DSP? Should also state that the number of people
with an ASD and comorbid psychosocial disability is around 85% and I believe it is about the same for people with Down
Syndrome. So it is not a case of 'just those people with depression or anxiety or schizophrenia' who are 'rorting the DSP', which is
the perspective of many - we need good supports for people with psychosocial disability which will also help others who have
mental health differences as a secondary disability get and keep work. [4 like]
G and most mentor programs will be scrapped that keep people from entering or re entering hospitals with mental issues [2 like]
MMM It's so frustrating when someone you love wants to work and can work and is denied because it might be a little challenging
for the employer. Hugz to you G for being a true champion for your son. [5 like]
BB We need to see more mental health facilties open. I don't think hospitals are the place for them. I think we need like it used to
be 30 years or so ago when we had places like Callum Park etc. Places purely to deal with mental illness on all levels. Places
where the staff are trained in this area. If we had these places reopen purely for mental health issues, which is on the rise, they
could have areas within them to help people with these hurdles of obtaining work, confidence and act as maybe even go betweens
with employer and employee etc.
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Reopening places like this would also provide LOTS of extra employment opportunities for people in the public. But instead these
wonderful old biuldings and their surrounding lands are earmarked for land development for states. All about money and not about
the community needs. Mental health really needs more money and support thrown into this area as it is an area that for some
people can be overcome with the correct help, and/or managed better.
CC I think the move away from institutional settings extends also to the mental health sector, BB. [1 like]
BB I just think it is wrong. Hospitals aren't really equipped to deal with issues like this and are short term solutions. Whereas, if
there were facilities aimed at this area they could provide long term help for people, whether they are people who reside or visit as
part of a program. There are so many people with mental health issues where the burden has been placed back on the families
where the person needs to be somewhere where they can receive 24 hour care etc., or other means of support. The government
needs to provide more help in the community in this area as what they have currently is just not enough.
CC Bringing that back to the discussion about the DSP - I wonder what would happen to people in institutional care who are on
DSP. How would you live in an institution and then be on, say, Newstart? [1 like]
G V there is not enough support no matter what disability you have. [4 like]
CC Sure you could. If you weren't entitled to a DSP - bearing in mind that there are people who are paraplegics here who live in the
Quad Centre, for example, and people with Aspergers who live in institutions in other states - there's a fairly good chance people
could be reassessed out of a DSP or are already not on a DSP. What I'm wondering is how that would affect people who are living
in institutional/congregate settings, because income support is not necessarily attached to your accommodation arrangements. So
what happens when you get kicked off a DSP and then have nowhere to live, not even an institution?
YY on Twitter: the assessment process inherently excludes episodical nature of disorders eg dep/ bipolar. Process focuses on
intellect function. #pwdadsp [6 like]
AS I actually hid my mental illness' due to fear of discrimination, and I managed to do so fairly well for the 5 years I worked full time
plus extra shifts as a nurse in the UK's NHS. No-one understood why I slept all the time when I went home, or came in looking
knackered. I did my job and I did it well, but I was prone to sickness and finally after my baby, my depression and anxiety took hold
like being sucked under a high-speed train.
I went back to work 2 days a week as it's all I could cope with, and I kept much to myself as a hand-full of senior staff thought I was
taking the p. Luckily many of the girls were all to happy to swap their shifts with me so I could mostly work lates. I ended up being
told by a sister one day when I went on the ward while off duty (on telling them about my mental illnesses) that I needed to look at
whether I really had depression or if I was just really tired from being a mother; as one of the other girls had PND and I shouldn't
make light of it.
I had been medically diagnosed at 14/15 years old, and was put on meds for suicidal thoughts, so I was pretty sure I had it.
I gave matron my resignation the next day, and to this day I haven't said who told me that. I just said that it was affecting my
memory with certain things.
When I came back to Australia, I was 7 months pregnant. I'd been on long term sick-leave with my back, and eventually HAD to go
on DSP because I just could not cope. I'm studying now to become a psychologist (researcher hopefully). I haven't finished a single
class because of how hard it's been since coming back home with my family. My GP just recently told me to give up Uni and get 1
job a day nursing (after just a few months previous telling me not to life more than 15 kg and take things really gently because of
my back and neck). I `need to improve our family's financial situation, then think about study because I'm not coping'. I'm actually
doing ok during this study session, despite needing special consideration to move my exam to the end of next session; as we've
had the process of going 5 hours drive to Sydney and back to get my youngest daughter diagnosed with high functioning autism.
Shit me, if I could work, I bloody would be, but I have learning issues stemming from my mental illness/medication, and I have 2
kids. Doing 2 subjects for me is like a full time course.
If I were put onto Newstart for not being disabled enough -- let's just say I'd be scared. [3 like]
DSP and Rural Issues
AAA I would suggest, if the Government want to make the DSP at all doable, they should look at each individual separately,
including their special needs, the extra cost of clothing, a realistic look at mobility, accessibility, and training of the employers to
understand the abilities of PWD's. Also free access to a financial adviser, I know I could use one. Also the cost of some extra help
at home if needed. [12 like]
K I agree AAA, there hardly any public transport where I am, I am wearing 15 year old clothes and I have worked for many
employers for nothing at my expense only to be dumped after a few months [2 like]
AAA Rural issues are a whole new ball game, distance sparsity of employment, education etc. [2 like]
A Thats true AAA. I live in regional and rural NSW. the work opportunities arent there [2 like]
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J AAA, a lot of those would be covered by the NDIS, and I think that's the right place for them. It would be incredibly difficult to get
the public to accept such an approach under a welfare payment. But under the NDIS they absolutely should be taken into account.
The rural issue is an interesting one. Off the top of my head I think this is a place where grants should be made available for small
groups of people to create employment opportunities. [2 like]
AAA Yes J, but I also feel that transport is a major part of the problem, fix up the transport in a lot of the smaller and isolated areas,
oh dear I could keep on and on!!!
DSP and Sole Parents
AE its not only dsp being affected it is also single parents they are planning on cutting famil tax which means i will have to surive on
400 a fornight to fe soned n clothe me n my [2 like]
AI I will not care because I am not getting money for my son. [1 like]
AE it will affact alot of people though i am a single mum n if u dont have your son in your full time care of course u wont get money
[1 like]
AI But I do got him in my full time care. [1 like]
AH I'm only getting $380 a fortnight, to pay bills go food shopping and still have money to last me. I also smoke and buy stuff for
kyi. If i can do it, i'm sure you can. [3 like]
J Really AH? "If I can do it, I'm sure you can?" We all have different circumstances. I can't speak for others, but some of the factors
that make life very expensive for this household are the significant cost of utilities (yes, there is a scheme for assistance for those
who have high heating and cooling needs, but the high costs remain, and many schemes require the bill to be in the name of the
person receiving the DSP, who may not be in a position to pay them), the high cost of rent to be able to secure a property that can
be made accessible, the high cost of medications and medical services necessary to provide documentation to receive disability
support. And so on. [5 like]
AE I struggle with 500 every one is diffrent I also have medical cost for my self plus daycare study fees internet phone gas
electricity meds [3 like]
AH So do i, i have to buy my medication. petrol for my car. Special creams for kyidens skin. put money away for fun stuff to do with
kyiden. Some people are just money hungry. [2 like]
And yes J, if i can do it, i'm sure she can. [2 like]
AH Don't get internet and phone plans if you can't afford it [2 like]
AE I need it for school n phone is prepaid I also have a heart condition so my cardiologist is a few Hundred per visit I am far from
money hungry daycare is 50 a day plus Melbourne is more expensive then Geelong for food ect ect I live in a very expensive area
not everyone's money sitionation is the same [3 like]
J And if your only access to the outside world is dependent on internet? And how does one go about arranging anything without a
phone? [6 like]
J Do you pay rent out of that AH? [2 like]
AE N I have to have a phone due to dhs m for daycare to call me if needed [2 like]
AB you get more money than single mums in the UK. $400 into english money is £218 a fortnight. we only get £142 for fortnight.
then we get child tax credit and child benefit every week. so an extra 100pounds each week. plus most of us get housing benefit.
your bills can't be as bad as the UK [1 like]
AF A phone is at the very least a matter of safety and security for people with disabilities and parents. It is not a disposable
expense. [5 like]
AE our bills r quite bad like 300 hundred so 150 pound for elctricity and about 200 100 pound for gas then u have water it is very
expensive here [1 like]
AB do you have to pay council tax? X
AE What's council tax we have land rates here
G I could not afford to live on 380 a fortnigt. you must be a wizzard. we just live and i dont buy takeaways, softdrinks, smokes, or
crap. my heating over winter is 2 grand alone and going up. makes.me wonder who REALLY lives with disabilities on this forum
CC We pay for water here, G. Ditto. A load costs $160 and with five people at home and sheep lasts us about three to four weeks,
with careful rationing. We also pay for gas and higher costs on fuel. You're the same as us, away from a city centre, so costs are
higher, just for general living costs. We don't have an airconditioner so we do not have those costs but we have additional costs
associated with travel to work and school etc. Depends on people's circumstance - I have a car and drive to work because we
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cannot catch public transport, so that costs several hundred a week due to how far away it is. We also support other people. What I
am saying is that you cannot compare people's circumstances, it is apples and oranges. My last land rates bill was fairly hefty, then
we must pay for firebreaks also which is a few hundred - many costs which all add up. [4 like]
CC There are also costs associated with things like emergency alarms - our mother's costs us a static fee per month. [3 like]
AC people are "money hungry" ? THat reminds me of a conversation once on the propaganda machine Australian families where
some woman was explaining how we should all be able to live on stale bread and potatoes. Or some rubbish. Australia is a rich
country, why should anyone suffer?
And the bastards running the page are getting all excited that people believe they have to live on potatoes.
I don't know about you, but i have a little more self worth than that. [3 like]
AB yeah land rates are the same as council tax. our council tax pays for the police, fire service and general council services like
rubbish collection. X
AE We pay for all that though our tax out of our working wages
AB you really have it hard in australia. the UK aint that stingy. I get all my rent paid for me. X [2 like]
AC that's good
AD that wont pay my house,
DSP and the NDIS
III The DSP should be about assistance for the Additional costs of Disability. However the general public are unaware of the actual
costs if having any disability, let Aline the fact that all costs aren't covered by the DSP. With the introduction of the NDIS, the
general public may believe that all and every costs are and will be covered by the NDIS, so there won't be any need for the DSP.
This is not the reality. [16 like]
O I am frustrated by the general publics confusion over the DSP and the NDIS. Not everyone on the DSP needs disability support.
If I was to review the DSP I would recommend spliting the group into 2. !. One group who is depending on others to meet daily
living needs or a guide bog or can, or hearing impaired and those who are just unable to work due to disability. The costs of living
vary with the degree of disability. Makes it difficult and confussing fo the general public. [2 like]
A it does O, we all have different needs, i dont need daily care and assistance to live, i can basically look after myself with my
disabilities, but i do need assistance, with say, getting to uni, help at work, etc. [1 like]
A Thats IF i stay on the straight and narrow, god help me if i had florid attack of the horrors, then i need a hospital. [3 like]
T Speaking of the NDIS, because it is going to offer a wide range of choice and access to a whole lot of services in the future, and
with this it's going to be privatised from the Australian Federal Government, who put about $14 billion into the project, how are
people such as myself going to pay for these services in the future, when with the Department Of Ageing Disability & Home Care
Services, I pay about $18 a fortnight for my Home Care Services? [1 like]
T I would say that this is one of the reasons why the DSP and the Australian Welfare system needs to be reviewed. Because if we
are going to be receiving services from the NDIS in the future and this is going to be privatised, then it's going to be more
expensive than it is with the Department Of Ageing Disability & Home Care Services, and other services covered by the NDIS
looking to become privatised. How can I afford this on my DSP in the future? [1 like]
T Because one time, one of my Home Care field staff told me that the field staff get at least $17 or $18 an hour. Sometimes even
more, depending on the services that their clients require. [1 like]
K of course there are extra costs for the disabled, I have to use favours from friends or pay handymen to do what a healthy male
could do, then the meds etc
R Most definitely agree with MMM, there is an urgent need to investigate the broader issue of disability support in this country
rather than just the DSP. The rhetoric by this government is portraying all people who access the payments as unworthy bludgers
which is untrue. Their actions only further margilize and demean ppl who quite often find themselves in the situation of need
through no fault of their own. How about strengthening the supports to further help people say enter supportive employment, further
training etc and have increased supports for carers to access some type of paid employment as well. [5 like]
DSP and Work
AG from Twitter "the DSP just allows me to survive. I get broken hearted that I work hard & still must rely on it. I wish it was more".
[7 likes]
VV I wish I could work as many hours as I want and have an amount with there being on an assessment criteria for every 5 years
or only assessment criteria for acquired disabilities. [3 like]
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H As with the NDIS, the ABS and the AIHW, the Social Security Act provides for the ranking of impairment severity. Those who find
themselves in the severest category are those of us who are least likely to have a long engaging careers in which to build wealth
and security.
I suggest that, where we do manage to defy the odds and gain employment or start our own business, we should be excused from
the assets and income tests in the same way that those who are on the blind-DSP are. [4 like]
CC Sorry, chipped in late.
* This is my situation. I am not on a DSP and have never been on one. I have a degenerative disability and I am married, I work
four days a week and my husband has a job. Between us we have six children, including children with disability, my mother also
has a disability and chronic terminal illness and needs care and support.
An OT told me I would need an electric wheelchair at some point, but that is way, way out of reach, as is a van and support worker
to drive it. We live in the country and there is no public transport. That is one of the major barriers for many disabled people living in
rural and regional areas. City people often say 'you can relocate' but what if your parents are your primary carers and you don't
have support to move out to the city? They often can't move if farming is all they know and their livelihood.
My workplace is over 45kms from my home, and the other two campuses I attend are three hours away in each direction.
When it became time to use a wheelchair, the thought occurred to me that it would have been a *better* situation for me to be on a
DSP. Because with means testing, I had to pay for my own equipment, as I was working. In theory I should have been able to
afford it, but having a family circumstance as a caregiver meant that I could not. So I relied on handouts (a whiparound on facebook
by my loving friends) and a charity donation to purchase my wheelchair. If I required a lot of expensive medications, working would
not be feasible for me. If I had to catch a taxi, even with taxi vouchers, to work, the amount I would come out with at the end of the
week would be $120 less than my wage (I costed it).
At the moment I am on stress leave from my job as a public servant over a two year battle over not having an accessible toilet.
Despite other systems that are designed to support us - my employer simply refused to access JobAccess funding that was offered,
even though it was pre-approved. I live in fear about what might happen in the future. My husband at present would be eligible for a
DSP as he has a life long back injury (from a truck accident) but he takes 375mg of Tramadol to get up and go to work every day.
You have permission to publish any part of this or use my name if required.
* There is an issue going on in WA at present where 'residents' of a local institution will be negatively impacted by the fact that part
of the hospital facilities that is colocated at their premises will be moving to XX. That means they will not be able to access the
(accessible) dentist, rehab technology and other essential services. If you are a person who uses a big wheelchair and has very
high support needs, accessing basic medical care often necessitates travelling far further and is one of the barriers to accessing
basic health services that are accessible.
* I also work in the post secondary education sector and there are significant changes that affect students, including the 'student
entitlement model'. Under the changes, the cost of training has leapt by sometimes over 300%. My organisation, like many others,
has dumped courses that do not make money, including the Cert I and II courses, which were often the only courses accessible for
people with intellectual disability or those who are disadvantaged in other ways. Changes like these impact upon disabled people in
the same way other barriers impact upon them.
'Normal' people go to work, go and study, start a business. Disabled people experience cannot access work because of barriers
like access to transport (no public transport in the country, inaccessible public transport everywhere and in many areas there is just
no transport, like industrial areas), lack of support at work to do your job, lack of personal care support because lack of funding etc,
or living in areas of high unemployment or other issues (many people have degrees and are unable to find work because of societal
attitudes, they have been for thousands of interviews).
Disabled people cannot access study because the 'cheap' courses (on the priority skills list) are not the type of work that people
with disability can often do (for example, working as a personal care attendant in the aged care industry) and the other courses on
the 'cheap' list are being canned. In TAFEs and universities there is no funding for personal care and this is a significant
disincentive to study. Add to this the other barriers.
Re starting a business, the NEISS scheme is still running - but the Cert IV is out of bounds for a lot of people because of access
issues, the wage that it grants you during the business start up period is the same as Newstart, $35 a day and less than the DSP,
so people with disability would not just be under the poverty line like others, but it would be impossible to live because of
disincentives caused by the costs of disability. There are also complications to do with carers payment for a family member who
would potentially be able to support a person with disability (to do paperwork or the business side of the job) which provide a
disincentive for NEISS.
We are currently being screwed from every angle and the changes to the DSP are another aspect of the screwing - except nobody
is going to leave the money on the table, right? [30 like]
A Its a hard slog [3 like]
T I couldn't agree more, A!!! It is a hard slog living on just the DSP!!! Personally I would like to see the Australian Federal Politicians
try and live on just $500 a fortnight rather than getting a 5 or 6 digit dollar sum per year for debating everything in Australian
Federal Politics down in Parliament House in Canberra!!!! [5 like]
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N DSP imposes a level of additional suffering onto some recepients [2 like]
Z I feel that the DSP, in it's current form, is more of a punishment. [2 like]
VVV Politicians should be made to live on the dsp for twelve months before they get there real pay just to keep them humble [5 like]
N While I am grateful for the DSP that I receive, it feels like a put down in effect; in relation to where I could potenitally be or what I
could do or contribute with better resources; or the potential level of health and wellbeing that could be reached if resources were
available. When a person hits a place of no where to go the system and what it offers is seriously in need or a rework. [4 like]
AS I see what you're saying MMM, and while I agree with you on the positive effects of work (I loved my old job), the services and
their locations need sorting first. I live in Wagga, and there are many country towns around in the Southern and central West of
NSW that are very limited with such services, possibly due to low populations. Work in regional areas has tended to be available
mostly to people that have social connections with employers, which is an unofficial code that many people I keep in touch with
have shared with me, and my family have personally experienced. Training is also limited with many industrial demand skills being
taught through apprenticeships, and many of these tend to go to youngsters as they're more affordable to employ.
I have a GP that doesn't think Mental Illness is a disability. I've studied for 2 years and not progressed because of financial
pressures of my Husband not being employed, and my being on DSP. We relocated to Wagga from Cowra so we'd have more
supports for me while I study, and also because my youngest daughter was a concern to me (SHe was just diagnosed with ASD
last week). My Mental health over that time was pretty bad, and I'm still having to get my meds right. My GP reckons I ought to give
up Uni...how will I be a psychologist if I can't cope with Uni? Get and job one day a week, because if you go back Nursing it's $60
more a week for your family. Just a few months previous she'd told me, no heavy lifting and be really careful of your neck.
I thought I was doing the right thing studying as at least I'm learning something that will help our family eventually, but according to
some people, an education is a privilege for those that can afford it, not a right.
We have these lacks of services, and stigma to contend with, even by people that should be more understanding.
The thing I worry about is if I go back to work (I'm totally voluntary and thus not eligible for a Disability JSP), how am I going to
cope, and what protections will I have if I relapse and need to have time to adapt to new medications?
Also, I'm not eligible for JET. I'm entitled to PES, but so are people without kids. Sure I get The CCB and CCR, and that does make
a dent in things, but fortunately my husband WAS eligible as he's a full time student -- enabling our youngest to go to day care four
days a week, and develop her social skills while we're a Tech and Uni. I wonder about the situation for single parents with disability
and children under school age, and how they cope. [1 like]
III Income Support and You! If the government stopped blaming the victim, each and every time, they need to reduce funding to pay
for other policy decisions. We were either born with or acquired our disabilities, without choice or control of having a disability. Stop
blaming us (govt) for your cost over-runs. Stop saying we are bludgers and should be on New-Start. If the federal government
actually employed people with disabilities, rather than blaming us for not working, it would show other potential employers that
people with disabilities can work and can contribute. The federal government could become the employer of choice for people with
disabilities. [25 like]
M more Govt places should take on disabled workers , but in a lot of cases Employer nowadays are paid more money by the Govt
to employ Refugees etc ISS a service for hospitals etc are actually paid money by the Govt to take on refugees they should extend
this financial help to disabled workers also [4 like]
BH Back in the day the govt had a quota for employing ppl w disabilities. What happened to that? Also I quit my job in the Fed P.S
because they expected me to keep up with sighted ppl! I couldn't so I quit! [4 like]
III Issues with the comparability of govt software systems both off the shelf and specifically created and adaptive technology like
screen readers. I could go on and on...! [1 like]
G one of my sons just secured a job on HIS own as an apprentice. He was doing ok till they found out about the disability. extra
month of trial to find reasons to sack him. [2 like]
Jody Sigh I agree III. They put things in place and when they work they take them away again. I would rather be a sighted worker,
or even a blind one, instead of being on the penssion. [42 like]
BO Still think quotas should reflect the population. 20% disabled 20% employees w/ disability. [2 like]
BI I think that Government and industry need to be more creative in inclusive employment. For people on the autism spectrum,
employment needs become both more complex and more individual.
This demographic has extremely high unemployment (figures I've seen quoted range from 40% - 80%). However, with some
relatively minor adjustments, this high rate of unemployment could be reduced dramatically. Autistic people also have unique and
marketable abilities to offer, if someone is willing to provide a suitable opportunity.
Many choose self employment, which has its advantages, but here again, appropriate supports would help many autistic business
owners to manage their business, market their services and do other functions that running a business requires, but are not central
to the skills they are marketing.
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On the flip side, putting autistic people onto Newstart creates everyone a headache - the person themselves, Centrelink and
various providers. Here is a real opportunity for a win-win-win situation, where autistic people have a real career with a DSP safety
net, if things don't work out, Government raises more tax from the increased participation and industry harnesses the unique
abilities. [2 like]
K Yes, why doesn't the government employ more disabled [2 like]
MM i have been looking for work, have skills, communication, IT background etc have worked in IT etc, no one interview in a year, I
need my pension and sure i will still be assessed as such, but with nothing less than a major shift in the community, employers etc
it is nearly futile trying to get work. cut my funds in half will not make any one overcome their prejudices to employ me [7 like]
CC I know. So is it ALL about societal prejudice and people seeing your wheelchair and not you? Or are there other barriers?
Wondering if they think there is a physical reason that they think you can't do the job - especially as you have demonstrated
experience and ability. [3 like]
R Most definitely agree with MMM, there is an urgent need to investigate the broader issue of disability support in this country
rather than just the DSP. The rhetoric by this government is portraying all people who access the payments as unworthy bludgers
which is untrue. Their actions only further margilize and demean ppl who quite often find themselves in the situation of need
through no fault of their own. How about strengthening the supports to further help people say enter supportive employment, further
training etc and have increased supports for carers to access some type of paid employment as well. [5 like]
DSP and Welfare Review (2014)
H I, for one, would welcome a review of the DSP if there wasn't a presumption that changes to it would necessarily disadvantage
those who are unfortunate enough to have to rely upon it. It seems like every new federal government has to satisfy itself that the
DSP is as lowly paid to as few people as possible. [7 like]
ZZ I fear this review is more about the government finding extra dollars for funding their Aussie population paid parties, Rather then
to actually to listen to our thoughts and comments. I just have no faith in our government stepping up to actually provide more for
us and or the careers!!! If I could live without the DSP I would! I Lost everything when I had my ABI from working myself too hard
trying to run my own business! I'm not even allow to drive a car slowly on the road now to look after myself better, But I'm allowed
to drive a motorized scooter around on foot paths and in shopping centres.... Well, That's if I could actually afford to buy a scooter
in the first place!!!! [1 like]
T A review of the DSP would be absolutely welcomed because our life circumstances change as we get older - oh well, in my case
it did - because I have learned to use newer technology over the last few years. [1 like]
T I also have to pay for other expenses as well - such as when my computer breaks down. I have to pay to get it fixed myself. I
don't rely on my parents to help me with this, because they are on the Aged Pension themselves. [1 like]
T In fact, the whole Australian Welfare system needs to be reviewed, because times have changed, skills have changed with added
training and experience, but there is absolutely no increase in the DSP whatsoever. Even if there was an increase in the DSP, the
rent of your housing property you live will go up, and so will other expenses too. It doesn't last for a whole fortnight - the DSP especially when you have to take responsibility for your belongings. [1 like]
O I wonder how the NDIS affects the impending review. I also think there's a wide scope of people on the DSP. There are those
who like me depend on support staff for pc. meal prep. need moblity equipment, and those whose disabilities impact their lives
significantly [2 like]
O I understand the NDIS will assist with transport costs but in queensland thats a long way off . . . [1 like]
B It is a long way off in many places O. The NDIS (as far as I am aware) is not supposed to have any impact on eligibility or level of
DSP received. [1like]
O True B but on story I have been following is that people supported under the NDIS will move from mobility allowance to taxi
seruices pay for not sure how correct that is. [1 like]
A At the moment you cant get mobility allowance if you are getting NDIS services [2 like]
AAA Their mobility allowance is built in to their package, so in a way they still get it [1like]
VV I am a person with mild multiple disabilities who lives with my family and I hate that there is a 16 hours limit when the other dsp
doesn't have a hours limit. The 16 hours a week itself is a barrier and I dony know what I would do if it be taken away completely
because reporting on newstart and looking for 22 jobs or some ridiculous jobs like that is not fair [2 like]
J Yes, the number of hours thing is stupid. There is an income cutoff. So why does there need to be an hours cutoff as well?
Same goes for carer payment. It includes the hours for volunteer work and travel. Which assumes that when volunteering or
travelling you are not doing it with the person you care for. Who says the person with a disability is not volunteering right alongside
you? [2 like]
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DSP as baseline allowance or entitlement
H I think too that Government and long-term DSP'ers see the DSP is two different ways.
For Gov the DSP is to top up, as it were, a person's income. So, if the DSP'er earns, say, $100, the DSP should reduced
accordingly (note: it is more complex).
For the DSP'er, however, the DSP is like the roof over his/her head. For someone who has been on the DSP for perhaps 20 years,
the prospect of loosing it, or having it reduced, can be extremely frightening. But, more significantly, DSP'ers see the DSP as
almost an personal asset or entitlement: and, from a pragmatic point of view, a decrease in the DSP is a decrease in their income
even if their gross/taxable income is more with them working than not working. [5 like]
T I think that in some ways the DSP is reduced, because quite on a regular basis, I have been in numerous situations where
Housing New South Wales would increase the rent of my unit. Over the last decade, I've had to pay almost triple the rent I used to
pay when I first moved in this unit, and the rent has increased a lot over time - when there is practically not much of an increase in
the DSP. [3 like]
A Thats true T, they certainly havent tripled the DSP [1 like]
K Cannot be considered as a top if the TO is waiting to get you if you earn more than $6000, which many us cannot do our own
cleaning cooking ets [1 like]
A if you're having trouble remember these people https://www.welfarerights.org.au/ [1 like]
A Also remember our advocacy team [1 like]
WWW Some facts: From June 2012 to June 2013 there was, for the first time since 1982, a decrease (of 0.7%) in the number of
people on the DSP (from 827,460 to 821,738), continuing a trend of decreasing growth since 2010. There has only been 0.4
percentage point real growth in the DSP over the past decade (after indexing to working population growth).
The DSP grant rate has substantially decreased and is now at 43.3% of total applicants (down from 64.5% in 2008-2009. This is
predominantly due to more stringent eligibility criteria. [2 like]
AJ My disabled daughter is in need of a new battery for her bathing aide, which powers the up and down movements of a seat
fitted in the bath. after trying on the net to find a new battery from the supplier i gave up. where and how can I get a new one?
Marisa also need's a new wheel chair as it is over 20 years old. How and where again do I follow this up? The new scheme would
provide the funding for such items, these items are essential to her wellbeing. Still confused and don't know who to see, any advise
thanks. [1 like]
U some people can do a little work and keep their head above water,most people can not work at all and never will again. [2 like]
Financial Advice
WW I think the financial advisor suggestion is great, as i know of too many people that do not know how to manage their money..
and do not live the quality of life that they should be with being on DSP. I manage to have a fantastic life socially myself, even
though yes.. taxi expenses do eat up a huge portion of my income. Id even suggest coaching, i believe it could have a massive
impact on how people with disabilities/ those on DSP live their lives. [2 like]
J Yes WW, financial education should be available for all people who are on long term payments. [1 like]
A Salvos offer free financial advice for people on low income http://salvos.org.au/need-help/financial-troubles/financialcounselling.php [1 like]
N Case managers that are Social Work and Psychology trained that can facilitate DSP people in working with and through their
issues and in findiing their way in life again. This would also help determine the NEEDS basis that each person has. [3 like]
BP its not much better here in the rural areas for anyone with any type of disability you have help for you child through early
intervention then they are on their own again till high school and if there is no special unit you can go whistle Dixie also you are
fighting the system to keep your child in the unit the teachers are terrific but the head hunchos who have never meet any of these
kids wont sign off on things then you have to fight all over again and see all sorts of medical people and the travel of 2 to 3 hours
each way is bloody hard sometimes
R Does anyone seriously beleive that the push to get persons on DSP off the pension will come with gnenuine assistance with
special needs, modifications to employment situations, training etc? I know I don't. I would like to do some suitable part-time wor
ideally from home to minimise disruption, costs and access to travel to work etc. [2 like]
AT I disagree with funding disabilities differently. I think that the system we have now could work, but with realistic allowances for
things like transport, medications, interpreters, specialized equipment, evidence based therapies etc are required. [1 like]
AA Their finance, their labour, emotional efforts or everything they can offer or possess is vulnerable and can become real easy
target of people around them.
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Their concessions, benefits, pensions are easy prey by the people around them. We must still support them more actively,if the
community wants to see the ral positive impact and a healthy society they want to see, nonetheless.
You fear frauds,not focusing on positive impact,the society will never see what they want to see.
Regarding people commiting frauds exploiting people with disability or thenselves will spend money to boost economy, but they will
themselves will perish. [2 like]
Health Care Card
J What of the low income health care card?
Is the income cut off high enough to allow you to find employment and still retain things like discounted medication and travel?
http://www.humanservices.gov.au/customer/enablers/centrelink/low-income-health-care-card/income-test [2 like]
W I do think this should be available for those on higher-than-now incomes if they can show that losing it would cause undue
hardship due to excessive disability costs … [4 like]
J So long as that test is not so onerous itself that it defeats the purpose! [3 like]
W Absolutely! [2 like]
W The thinking is merely that having an absolute cut-off creates more perverse incentives of people who "can’t afford" to earn more
because they suddenly lose a huge amount of concessions that are collectively worth far more than the increase in earnings would
be worth to them... [2 like]
Informal Supports
CC A brought up an interesting question for me about communities and informal support. If you live in WA, you have probably
wanted to punch an LAC who says 'what about your informal supports?' That's the imaginary person who takes out your bin every
week...well, it may not be imaginary, but often people are isolated by disability and geography.
When we were really, really poor - poverty level for us was not homeless but Pete and I went without food for days at a time so we
could feed the kids - we had a very good relationship with neighbours. I would go down to my friend's house and swap some
potatoes for some eggs or an onion for some dishwashing liquid. Once her child came to live with us for a fortnight as she could not
feed her, and we cobbled together stationery for school for the kids at the beginning of the year.
It was not a terrible existence but it was certainly very stressful. In the country things are probably different.
I haven't been to my friend's house for a long time, because it isn't accessible. I wonder how many people do not know their
neighbours for that reason - physical or other barriers which prevent natural friendships happening. And 'informal supports' - what's
your viewpoint? [7 like]
MM i hate that term there is no such critter in my neck of the woods. (people round here more chance of them dumping their
rubbish in my yard than take my bins out) i now have my primal scream face on and cant get rid of it
CC If I think about it bit by bit most of the things I can't do are done by my children or husband and they are mostly physical things.
The things I find really hard to do are go and do a weekly shop for my mother (try to find a shop with a wheelchair trolley, load and
unload food, it kills me), change a gas bottle (can't do it), read the meter (it is in the paddock), take the blasted bin out (down a
winding gravel country driveway). And no those critters seem to have been hunted out over here too, MM LOL [2 like]
MM yes those sorts of things, change a fuse, swap a bulb. when shopping store people and other shoppers are normally helpful,
but if i dont do it or a carer then it doesnt get done unless paid for. [1 like]
AV Informal supports? Ha!
My neighbours are most noteable for parking on the footpath... including the two building sites that block the footpath AND the
bikepath. Then there are the neighbours that played loud music all night til 6am. Or the neighbours who had a loud fight that made
me wonder if they were about to get violent w each other and if I should call the police. [1 like]
AU Yep. Can't visit neighbors because of access. My hubby has always made a point of introducing us to the neighbours though,
so we have one sides phone number. One house in Melbourne, our neighbours son had a disability (not physical) but they made
the effort, and their son did our lawns for us. [3 like]
MM i had some one empty their oil change all over my bins and yard most helpful, ecco terrorism and vandalism, most informal but
AU Plus it is really hard to ask for something when you don't feel you can reciprocate. Or to hassle someone who said they would
do something for you but doesn't. [5 like]
MM boffinspeaking nonsense stuff to me [2 like]
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CC My mother has a neighbour who is immensely good to her. She takes a day off every three weeks to take her to the hospital (I
can't as Mum also uses a wheelchair) for cancer treatment and she also puts her bins out on the road and checks up on her. We
could not manage without her. But they have known each other and had a sisterly relationship for many years - and I think those
things like access or societal barriers prevent those relationships happening in the first place. The places many supports come from
are places like church groups, community groups like CWA or RSL or Lions, but a lot of disabled people can't afford to go and
volunteer their time or be part of those groups because it costs to get there in the first place. [3 like]
AT Many autistic people have few informal supports. In rural areas, this can be a major problem too, especially for people with
mental illness, as they are frequently misunderstood or greeted with suspicion or mockery. Now that we have skype, professional
help is easier to access but internet informal supports can often keep people in a rut. If you belong to a depression group, for
example, when you get better, you no longer fit the group, so you will be excluded. That means that to keep the informal supports
you need to get well, you cannot get well. [1 like]
J It is complex. We all know families where the impact of disability is greatly lessened by the significant informal support they have,
and such families can find it very difficult to understand the plight of those with no supports at all. Does that mean there is a
question of differential access?
For me, every informal support I have is a relationship. That means reciprocity. So they support me and i support them. I have two
neighbours that bring my bins in. I do the same. So to assume that because someone brings my bins in means this family doesn't
need support is a false assumption. Because if I couldn't offer something in return I would be reluctant to ask. It's like the question
of home help. Why should home help be denied because there is someone else in the home who can do those tasks? The point is
helping with the contribution that person would make to the household tasks, rather than assuming the other person/people there
can just do everything and that that doesn't impact the relationship.
One year I was offered a very discounted rate for a hotel room when the kids were sleeping over at a kids with cancer function. I
had no use for the room, and could not afford it, but a few us of chipped in and booked it as a gift for my assistant at work who was
having a birthday. That allowed me to give her a gift I otherwise couldn't, and even up the balance a little for all the times she
helped when I could not be at work.
Just because you have a relationship like that doesn't mean you don't need support. It just means the ways you use it might be
different.
And that does not answer the question of what that means for people with no supports at all. Perhaps there simply is no equitable
response to that, except that the provision of some support may allow them to create relationships of reciprocity that see them more
included in the community. [4 like]
CC I know families who have a significant amount of informal support, but I don't know any individuals who have much informal
support at all. I wonder why that is? Because we are so different, or because we are so isolated? And AT is exactly right - perhaps
that is also about the perception of difference and says something about why people support each other, or not. [1 like]
J Or perhaps because the relationships held by a family are able to be activated when necessary, but an individual is unable to
create those relationships alone. [1 like]
FFF Unfortunately like so many other generous things that occur amongst friends, this has been appropriated and labelled so that it
can be incorporated into the 'package' of 'support' around a person. The mere use of the phrase by someone who controls the
funding purse strings seems to imply that they believe that these relationships can be manufactured out of the ether and quantified.
The reality is that they can't. Indeed it is this arrogance that has shattered the social networks around vulnerable people and
replaced them with bureaucratic responses imbued with ever increasing layers of policy mumbo jumbo that further drive away
anyone who may be remotest bit interested in having an 'informal relationship'. It would be more appropriate if bureaucrats stuck to
funding the support that was necessary and creating the infrastructure foundations of a more inclusive and participatory society
rather than fostering division, hate and an inaccessible world. [7 like]
C Don't get me started on informal supports! [4 like]
AW Informal support is one of the things I have to ask people about in my job as a matter of course, but I try to keep the language
accessible: "Is there anyone around who helps you out? Do you have family nearby?" The answers I get are invariably complex,
but generally include:
"Well, I have relatives in Melbourne, but they don't get out here often"
"Yes, but it's my elderly parents and we're starting to worry about their health"
"There's some family involved but we're worried about codependency."
"I can get the neighbours to mind some of my kids but not the ones with disabilities because of behaviour issues"
Sometimes the people providing informal support are also the ones perpetrating abuse or neglect.
In general I think country people are more likely to be known and that's a good informal means of protection. But lack of access to
other houses, having a partner who works long distances away, having no family nearby are all more common. And if you're
transient no matter where you live informal support is impossible to build.
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Personally, I'm lucky. We have friends, family, coworkers and neighbours in our lives who can all do small things for us that make
life easier. A lift to work when it's too hot to take the dog on the footpaths. Help to get a new outdoor setting from Bunnings when
it's too awkward to take a taxi. Mowing our lawns for money.
These relationships are good in part because there are lots of them. We aren't wearing down our relationships if we ask for one
thing once in a while. They are all genuinely reciprocal relationships. And we have choices about who we ask for what, so we can
engineer the most comfortable outcome.
Natural supports are a good thing to maintain, generally speaking. That's assuming you can get them in the first place. Done well
they can give you dignity, connectedness and flexibility. They can mean you're less reliant on the lottery of waiting lists and whether
your worker is good. They can minimalise institutionalisation of a person's life. But it's critical to know how many, how stable, how
healthy and how freely chosen they are when they're factored in to the mix. [2 like]
J Yes AW, when you are bumped around from place to place you are too busy surviving to build such relationships, and can be
invisible to your local community. [2 like]
AT Informal support is generally, although acknowledged not always, "women's work" and is therefore one of the many unpaid
expectations put on females to prop up society. [1 like]
FFF Sadly you are right AT.... However the original idea is that it is nothing more or less than the social capital that exists to varying
degrees in communities. Unfortunately over time this has become seriously eroded as we've become more obsessed with
individualism and less understanding that we rely on each other.
A I threw co-dependency out the window long ago in the 90's. My parents help me and i help them, what the hell is wrong with
that? LOL. If we listen to too many shrinks, all our families would be busted up, none of us talking, all self actualizing. When you're
disabled and on a farm with no means of transport, THAT is not the best way to live in the country, that is very isolating, despite
having neighbors who might drop in. I've heard it called informal supports, but i prefer to call them friends. In the 80's growing up, in
Wollongong in that economic depression where they sacked thousands of steelworkers, a lot of us unemployed would stick
together. But up in Country towns, like Braidwood, or despite being called a City, Goulburn, we have a lot of mad keen gardeners,
that share, and there's fruit and berries to pick in season, if you can do it, and share as well. People are likely to share eggs. We
would share what we could hunt, fish. Lots of unemployed people would fish. It was work in a way. More productive than writing
endless resume after endless resume for jobs that didnt exist. My friend has bipolar and he was hyped one day and tried to mail a
dead kangaroo to the prime minister, bought the road kill roo into the post office, put it on the counter and asked for wrapping paper
and stamps. He was justifiably outraged at the road kill. Anyway the cop was called, who knew him, and took him to hospital,
because he knew him well, knew his symptoms, no guns or tear gas or baton involved, passenger seat of the cop car. I'm not
saying it's perfect in the Country, there's a lot of gossip. There can be bullying. But it has changed and been more accepting. I knew
members of a psych team well in rural South Australia, for various reasons, and one of their main gripes was the community was
over protective of those with mental illness, and would get upset if they took people away from the community to Adelaide, 300km
away to the nearest psych ward, for a start they couldnt just go visit. As for creating these friendships and relationships, i think Sam
is right, its often hard to get access if you're disabled to the meeting places. Scouts have definitely made an effort over the years
though. So have many churches if religion is your thing. I've never been able to afford Lions or Rotary, but the local people here
would be welcoming. "My" particular church, has a community garden, which they made wheelchair accessible, and lots of people
garden there, including new refugees, as well as regular ozzies. Volunteering is thethe key to all this, we volunteer more in rural
and regional areas, because the work simply wouldnt be done otherwise. It is a very good reason, why, i would never live in Sydney
ever again. [3 like]
CC when I was down at the quad centre one day I met this very lovely older guy who was also from the country. He is in there now
but his younger days were spent volunteering - I have that instant recoil about 'tin rattling' for disabled people but this guy
volunteered for RFDS for years and consequently met a bunch of others...certainly better than be tucked away somewhere and not
connected to other people. I wonder how those things we all do in the country can be translated to city living and how that could be
used to offset some of the dismal crap caused by poverty - I also know some people who do stuff like wheel and deal on eBay on
the side, we should be exploring all these avenues I think because all the signs are that things aren't going to get better any time
sooner. Thank you to WWW for starting this important conversation. [1 like]
DD I know both of my neighbours...The man and his son who live in the DoH place next door are WONDERFUL, I couldn't ask for
better neighbours. The single guy on the other side has recently broken up with his fiance, so I give him space. He knows about my
cat (my 'escaped' boy with skin cancer) and feeds him now and then. I'm grateful for this. He recognised my cat’s a stray and
wouldn't live long if trapped again. He's happy with my cat being there, and because he knows my cat’s fixed, he's not worried
about a multitude of kittens! [1 like]
AC I've had a couple of awesome neighbours, one who shared babysitting with me. Our flat doors were kept open and three kids
ran between my flat and theirs. [2 like]
FFF Informal support happens because people choose to make it happen because they like each other not because some LAC
thinks it's a nifty idea or someone made shit loads of money describing how friends do stuff for each other therefore it's a good idea
for people with disabilities to have manufactured friends. [2 like]
W The other thing about informal supports - and this is basically part of J’s point about informal supports being relationships - is
that you have to be careful not to overtax them. If the formal supports are insufficient you end up going without and/or asking so
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much from informal supports that it damages or ruins the relationships. And then you’re left with nobody to help you *and* no
friends... [2 like]
A Thas true W. Bit its also about "give n take" where we both give and we both take/ So the guy volunteering in the wheelchair for
the bush fireys, found himself a volunteer job he could do instead of putting the wet stuff on the red stuff. I hope he had lots of
mates down the fire shed.
W A: That’s true, but many of us are significantly limited in what we *can* give reasonably which means most of those relationships
are already strained. I can’t help my friends when they are ill by taking dinner over to them or cleaning their house or babysitting
their kids; I can’t thank my Dad for giving me lifts to the hospital by taking him out to dinner or paying him for petrol or making
dinner for him; then neighbour who takes my bins in and out every week can’t rely on my to feed his cat while he’s away or help him
with the gardening …
Sure, there ARE things that I can do but my reliability for anything is utterly sucky and if I can only function for 2-3 hours a day and
from bed then my triage of "what to do" is already so incredibly limited that the normal give-and-take of relationships is basically
impossible in most cases.
A You know W, just by watching you on the net, as a facebook friend and regular contributer to debate, you are almost always
positive, supportive and kind, and if that translates into real life, you'd be pleasure to just hang around with. [4 like]
A i didnt mean to stop the debate, and i'm sorry if offended anyone including W.
J You got that right A.
AT A, you are quite right that there is nothing wrong with give and take and equal relationships where people help each other. That
is part of what it is to be a family. Sadly, not everyone with disabilities has family and not everyone who has a family experiences an
equal relationship. I would think that most people here have seen situations where the person is obliged to be "grateful" or is an
unpaid servant in the home. In the case of autism, there are a number who are not allowed out without a family member to "watch
over" them, and I am talking about people who have the capacity to be independent if allowed. Just because people live in families,
their needs should not necessarily be assessed on that basis. It should be about the capacity for independence and facilitating that.
If you are happy with your situation, that is fine. I hesitate to suggest that it might not always be possible, life spans being what they
are. I also do not think that situations which are ideal from a funding point of view should be considered the gold standard for
funding. There are far, far more issues that should be considered and facilitating independence should be a high priority. [1 like]
CC And not everybody has friends, either. Not in the way other people have friends. The family thing - in WA, this is a very big
issue - drives me NUTS. When people talk about disability, they often talk about 'the families', as thought there are no individuals
who are unsupported by family or for whom family is not a consideration. That makes me really cross. [2 like]
CC I do not know why there is not a massive outcry by the carer lobby, come to think of it, about the discussions around changes to
the DSP - would it not mean, for many, that some hard won independence would be lost and that family care would be the default
fall back position? I haven't heard anything from Carers Australia or the other groups.
BD I cant visit my neighbours and dont know any of them...the one that was really really good moved away in 08 right before i got
sick. As for informal supports they dont exist with me Everyone asks about this like Disability SA or whomever but i have no one
and the only one who helps other than support workers who are paid is my husband. I hear from one aunt maybe once a week
(usually i ring her) and everyone else either isn't around, or is interstate (have a lot of family interstate)
BW I would just like neighbours to be more friendly and not treat us like we are virtually invisible. [1 like]
Medicare and access to physiotherapy
MMM Other thing to think about: medicare funded services such as physiotherapy. For example in order for me to keep working (I
have Fibromyalgia) I need regular massage/physiotherapy to supplement medication. My health management plan gives me 5
visits per quarter,which I have to pay up front and then claim. I'm lucky compared to many because I can work 25 hours a week in
an office job, but I can only work because I need both physio and medication, all of which comes from my salary. People with
conditions or disabilities should have access to more services such as these if it helps them to be independent and function better
in the workforce. Managing my income can be fraught, sometimes I can't afford physio especially if in the same week I have to buy
medication.. My mobility suffers. [9 like]
J And the paperwork required to access such services, the medical appointments, etc etc should be less. Oh wait, that's what we
wanted from an NDIS! [3 like]
C I'm in the exact same position [2 like]
K I did not know I can get Physio, because I have been trying to do my own Physio for my pain [2 like]
MMM K You need to consult your GP and ask for a Health Management plan which will entitle you to 5 visits to a physio. [1 like]
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Superannuation
H Superannuation pay-outs: For those lucky enough to have had employment and had contributed to a superannuation fund, it
should be easier for us to access our Super pensions earlier than 60 or whatever the age is. And, this should be exempt from the
assets and income tests because we were tested on our contributions when we earned the money that we contributed. [4 like]
R My super pension is taxed. This pension is just about half of the minimum wage. I worked for 23 years full-time and paid tax at a
substantial rate. I was invalided out so I could access this pension and super at the time of invalidity -52. However I was part of a
very generous Commonwealth Super Scheme which no longer takes members.
B I agree H. Accessing my super now would make a huge difference. I could reduce my mortgage substantially which we give me
more disposable income to spend on regular therapy and massage. I might even be able to purchase a more suitable accessible
vehicle ;-( How do we make it happen?!?!
H Hello B, At a personal level people should consider consulting a financial advisor who specialising in superannuation. I've used
Dixon Advisory in the past and they are excellent but very expensive. On a more systematic level I think it is probably worth writing
to the Federal Finance Minister about. There are NGOs who provide financial counselling to people on lower incomes. But, these
are usually mostly concerned with debt management. It would be good to have a financial advisory service that specialised in
disability and wealth creation and security. I've not tried to access my Super because, while I'm no longer a public servant working
38 hours p/w, I'm not quite really to excuse myself from the workforce quite yet. But, closer to the end of this financial year, I will be
taking my own advice and consulting a financial advisor.
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