Genice’s Story.
I’m 42 years old. I have tunnel vision and I
have learning problems, including dyslexia –
this means I can take things in slowly, I have
trouble remembering things. Doing things
with ‘vision’ helps – I have been driving since
I was 20; I visualise my routes and use
landmarks to navigate when driving. I am
adopted - dad and my brother, with his
family, live in Canberra; my adopted mum
died in 2009. 7 years ago I got in touch with
my birth mother and my 4 siblings who live
interstate; she and 2 of my siblings also have
the same learning difficulties. I need help with budgeting and managing my money – dad is
helping me with this at the moment. Dad is currently helping me move into my new flat; I
have tried living in shared accommodation this has not worked out for me.
I began figure skating when I was 8 and pursued that for 32 years. With skating I felt like I
had achieved what I wanted to, and so I wanted to try something different. So I in 2003 tried
10 pin bowling in a disability league for a while; I asked my manager to be my financial
guardian and she did this for 1 ½ years. The team went away a few times, my fiancé was
part of the team too, I had a great time – but then things ended between us, I left the
league and also ended my relationship with the team manager too. It was hard – for people
with disability, we let people take us in, they put out a good impression, then you find out
their bad side and get hurt; and we don’t know how to pull ourselves out. She also did not
like me having contact with my family. So with nominees, people with disability should have
a choice but sometimes people can take advantage of this. I now swim, and in 2007 I won 3
gold medals at the Special Olympics in New Zealand! I train 3 days a week in a squad with
various ages and really enjoy it.
I worked in disability services as a disability support worker for 12 years – 10 in a home and
2 in a school. Then mum helped me to complete my Certificate in Child Care at CIT and I
worked in a child care job for a year when I had a fall which really hurt my back - that was
middle of last year. For the past 4 months, I have been working 4 days a week sorting mail
for a government department; they’re 6 hour shifts beginning at 6:30am. Yes, I would like to
keep working but I would like a job that is appropriate for my experience – I really value and
enjoy helping and caring for others. I got a lot of achievement out of that work, but because
of my fall, it’s not reality. I would not be able to do another course at CIT because mum is
not around to help me like she did before she died. Going back to disability support work
would be more fulfilling for me than sorting mail – I would need work that is flexible
because I am now unable to assist with lifting for instance, but I can do the other tasks
involved with the role. I would also want to continue in my swimming squad because it
keeps me active.
My tunnel vision is getting worse each year. I contacted (an agency that provides equipment
for people with vision impairment) for a cane but at the moment I’m not blind enough to
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get a cane – once I take my glasses off to swim, a cane would help me to get to my swim
lane independently and I wouldn’t have to rely on anyone. I’m seeing a psychologist and I’m
also on anti-depressants I started having seizures last year and so I have been asked not to
drive, the doctor thinks the seizures might be stress related – so I catch the bus to work at
the moment. I have been given a shower chair as well.
When I go out with my friend who has spina bifida and is in a wheelchair, they always seem
to talk to me rather than her, like she’s invisible; other times people stare at us. I find
sometimes at a restaurant, we get seated out of sight – once at a table right in a corner
facing the wall. My goals? Well, with Rent Assistance I have now found somewhere to live - I
would like to be in a relationship, have a husband – someone who is independent like me
and is interested in my swimming. I want to be treated nicely and with respect – which
hasn’t been the case in the past!
It is important to have people with disability informing how the NDIS works because they
know what it’s like for us.
What I want the NDIS to do for me:
I would like to have more meaningful work, particularly as a disability support worker with
modified tasks that don’t include lifting.
I would like to continue training and competing in swimming.
I would like to continue living independently, as well as find someone to be in a respectful
relationship.
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Allison’s Story.
My name is Allison. When my daughter was 3 years old she was assessed as having the
development of an 18month old child. Now, two years later, she is caught up and ready to
go to the local school with only minimal supports. This has been achieved, in huge part, by
the early childhood centre who worked so hard to get her to this point. We’re all set to go!
She is enrolled, and the school is ready to accept and accommodate her. But… I can’t get her
there. I don’t drive, and I have now acquired a disability myself that has made it unsafe for
me to catch a bus or even walk with her, and transport services will only transport a child
with additional needs to a special needs school, not the local school. All that early
intervention now could all be wasted because I can’t physically get her to school. Clearly
there’s more to this story, so let me explain.
For the last two years, despite the acknowledgement of my daughter’s developmental
delay, her inclusion in the early intervention program, and being ‘on the list’ of the service
provider, I was unable to access any other support or assistance, such as transport or
respite, because there was no specific diagnosis. As a single parent who doesn’t drive and
with no family supports, I managed the buses to take my daughter to the early intervention
centre, mainstream preschool, and child care and to her specialist appointments all over
town, as well as maintaining my part-time job. Work is very important to me: I strongly
believe in the importance of providing a positive role model for my daughter. I got no help.
It was a very stressful time. Unbelievably so. And one day in June last year I exploded! I call
it an explosion because that was the effect. It was thought I was having a stroke; it certainly
seemed like it, and that day had been particularly stressful. But they found a mass on my
brain which turned out to be the result of MS. I had no idea that was even a possibility. I
spent 11 weeks in hospital and during that time my mother, who has a severe anxiety
disorder herself, looked after my daughter. I had to learn again to talk, walk, the lot, and I’m
still very unstable which is why it is not safe for me to walk and take buses. I need a mobility
scooter and my Occupational Therapist is helping me to get financial support for it. When I
get a scooter, I’ll be able to take my daughter school myself, or at least to the bus, and I’ll be
able to return to my job which is still being kept for me. At the moment though, I’m pretty
much confined to this house, and desperate not to lose the advances my daughter made in
the last two years.
There are further complications: there’s no place in this house for a mobility scooter. I am a
tenant of public housing and I am on the priority list for a transfer to a suitable property.
Housing have been very accommodating of my particular needs regarding location close to
my mother, within the range of her limited driving and my scooter; and the modifications
and future needs for my deteriorating MS. Once I move, I’ll be able to get a scooter; my
daughter will go to the school in that new area, I’ll be able to get her there, and I’ll get back
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to my job. But if there’s no assistance with transport, she won’t go to school until we move,
and there is no telling when that will be. Until then, we’re housebound here, together.
Early intervention has been successful for my daughter’s development but the stress
resulting from lack of carer supports in that time, I believe directly contributed to the timing
and severity, and the dramatic nature of the onset of MS. This should not have happened
like this – not when I did ask for help. I feel that the help I am now getting (a cleaner once a
fortnight and assistance with shopping) is given out of pity, not entitlement.
We shouldn’t have to be fighting, begging for services. When I was in rehab, the social
worker put pressure on my mother to take my daughter permanently. Aside from the
inappropriateness of that for my mother with her own disability, it was as though they knew
that there is not enough support available. The NDIS gives hope of being able to buy
services and supports, not beg for them. But the services have to be there. It concerns me
that existing service providers are merging. It seems they’re trying to create a one-stop-shop
which will potentially dominate the ‘market’ and eliminate choice. It’s important that there
is an understating of how many gaps there are in the system. The ‘market’ has to
accommodate people’s actual needs (for example, transport that isn’t necessarily associated
with respite).
I’m concerned about our eligibility under the NDIS. MS is both degenerative and relapsing.
There are, and will continue to be times that are difficult, and times when it’s better. And
my daughter’s additional needs compound my own. She needs a better life, she needs a role
model, and even just for that, I want to work and there’ll be times when I need more
support. I’d go crazy sitting around all day. I want to be able to care for my daughter, to be
the best parent I can be: and I’m going to need some assistance to enable that. So you see,
it’s not just a housing issue, as some services say me when they tell me they can’t provide
me with support, these are long term needs: it’s lifelong.
What I want the NDIS to do for me:
I’m ready to go… I could manage my own services… I know what I want…
I want to be able to buy my supports and services, not beg for them.
I want to have real choice in the supports I can buy and who can provide them.
I want support that will enable me to be the best parent I can be.
I want to have consistent support workers in our lives.
I want to return to work.
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Pedro’s Story.
I’m 52 years old. I’ve been in a
wheelchair since I was 11 and I wear
hearing aids. Dad died in 1980 and
when my mum died in 1994, I moved
into public housing. I have worked for
27 years – I’ve been at my current job
for 13 years; I used to work fulltime but
recently, because of health issues, I
now work from Monday to Wednesday.
I help manage a fleet of 16 cars; keep a
record of kms, tyres, wheels, running
costs, all of that. I also help in the office
with name tags and labels. I designed
an office plan/ layout for work. I’m so proud of myself for doing things – I feel happy when
people say, ‘Wow, you did that?!’ I won a home design award – I taught myself, using
Windows Paintbrush and my imagination. My goal is for others to look at my designs and
enjoy them. I also designed the ramp that was built outside my house.
Taxis used to cost $590/month and were always running late… by the time I got to work, it
was time to go home. 2 years ago, my advocate put me in touch with community transport
services – this costs me $2.50 each way, to get to and from work, and they run on time. I
also have a motorised scooter, the Vita – I got her in May last year and I’ve already done
7000 kms. I used my old scooter for 15 years and I did 150,000 kms – to get to work, to Civic,
in the rain and in the wind. When I do my grocery shopping, I travel 45 minutes on my
scooter. This supermarket has plenty of room, staff are happy, they all know me - I leave at
the crack of dawn, go have a look at what they’ve got, come back home, order online and it
gets delivered the next day.
I like to travel. I’ve been to Melbourne 8 times because I like watching AFL live – 3 times to
the MCG, very noisy. I met a guy through work many years ago – he offered to fix my
computer for free and now every year we head to Melbourne when he goes for work. I jump
on the internet and book a motel; I can get to the game and around on trains and trams It’s free and I can do it by myself. This year I’m taking my scooter. Mum and I did a lot of
travelling. I’d like to keep going to Melbourne, travel to Adelaide, down to the coast - I
haven’t been there since mum died, it’s too expensive. I’d like to travel with someone else –
help them and show them the way.
My goals are to look after my own house, do my grocery shopping, clothes shopping, go to
the football, go to the movies and have my transport. At the moment I can’t manage my
own goals if there’s no one next to me.
I’ve had a cleaner once a week through the same service for over 10 years but recently
they’ve stopped. My worker didn’t like cooking what I want or doing things the way I
wanted – she wanted to do it her way, not my way. Now everything’s changed in my life –
they’ve mucked up my goals! I can’t call them, they don’t tell me anything, and they think
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I’m a dummy. They called my sister without my permission. I got a very bad shock. My
family hasn’t talked to me since – even my Christmas card got returned. They absolutely
ruined everything. There’s a gap now – I want to be happy, not miserable and hurt. I want
everything fixed back to normal before they walked away from me. I’m not the only one this
is happening to – my advocate is out there helping me with this big issue. We’re trying to fix
it.
In my younger days I would just pick up a goal and carry on. But now when you’re in trouble
sometimes you need a little bit of help. I came home one day, jumped on the internet and
got in touch with the advocacy service. It helps to have someone next to me.
What I want the NDIS to do for me:
I want people to see what I can do and not just what I can’t do.
I want my control over my life to be respected – this is very important to me.
I want support and assistance based on how and what I would like.
I want to give my permission before someone talks to my family about me.
I want to have someone to advocate for me whenever I need.
I want to keep working. I moved from lower levels to higher levels – I love my job, every
minute of it.
I want to be able to travel, with someone else so we can help each other.
I want to be able to help others.
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Jenny’s Story.
I was diagnosed with schizophrenia 17 years ago. My father died 7 years ago and 6 other relatives
died of cancer in the space of 6 years. That’s a lot of grief for my mother and I.
I’m on a lot of medication and I have no say in it. I kept telling them that Risperidone was affecting
me badly but I was ignored. I used to work for the Therapeutic Goods Administration so I’m aware of
what these drugs can do. It made me angry and violent, and they didn’t take me off it until I hit my
mother and copped a criminal charge. I was very severely dealt with by the police, even after telling
them I had schizophrenia. I was locked in a hard cell, bashed and sexually molested. I had begged for
years to be to be taken off Risperdal, but only after I was charged was I taken off it. Now I’m under
treatment and restriction orders because I’m considered to be violent. That has caused me a lot of
hurt.
My mother is my carer and we want to live together but I’m under orders and can only stay here a
few nights a week. My mother has a flat under her house for me to live in but I have to stay in my
public housing flat in a large complex where there are drugs and violence, and I feel very unsafe. I’ve
been bashed there, too. I want to move back home and my mother wants me to. I need the safety
and stability. I want to choose where I live, not be controlled by people who think they know best.
You’re told you must do as they say, even though it can be the wrong advice. I’m not heard. I’m not
listened to. Ultimately I should make the decision. No matter how sick a person is they are still
entitled to their views and opinions. I want to be a part of the treatment team, not the object of it.
And I want to choose my psychiatrist.
My primary goal is to have choice and control of where I live. Once I’m safe and stable I want to get a
job, maybe with the Salvos doing charity work, helping people, or maybe as a medical receptionist or
as a Personal Assistant. Maybe I could do business studies to help me get that kind of work. And I’d
save for a car. I’d like my boyfriend to move in with me, and I’d like to get married.
It’s very important to have someone independent to help guide me through all this. I’ve had an
advocate who works with me and listens to what I want, and I know I need to have someone like
that with me. The Public Trustee controls my money at the moment but I wouldn’t like them to
control NDIS money if I had it. They look at things differently; they have a different purpose. So it’s
important to have someone independent beside me to help say what I want so that I am listened to.
What I want the NDIS to do for me:
I want someone independent to help me get control and choice of where I live.
I want assistance to find and maintain a suitable job, and if that means help to study, then that too.
I want independent support so that I can become a part of my medical treatment team.
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Janice’s story.
I’m 47 year old. I have cerebral palsy and need 24 hours
care. I have been living in supported accommodation for
the past 6 years with 5 other people – there are 3 units
with 2 people in each one. At present, I am unable to leave
my bed for the past 2 months because being in a
wheelchair is really uncomfortable due to health issues. I
was born in Canada and have travelled around Australia a
lot because my dad was in the navy. My family members
live in New South Wales; my parents call me twice a week.
I have a cat called Princess who is almost 2; she curls up on
the edge of my bed during the day.
I like putting on makeup and getting my nails painted, just
like everyone else – but I need help doing this. I do not
sleep very well, so I watch TV in my room. What frustrates me at the moment is that care is
so structured: meal times, showers, etc.; and some workers’ attitudes need to change there needs to be more training. I need 2 people to lift me and this makes me frustrated
because I can’t do anything myself. I’m a normal person and I want to have my privacy –
sometimes when I’m by myself, I would like the door to be shut but I’m not allowed. I feel
like I don’t have the right to be responsible for my privacy and having some space.
I hope I am up and about in 2 weeks’ time. I usually get a taxi and take my electric chair and
go to the shopping mall. When mum and dad visited me at Christmas time, we went out and
it was really uncomfortable. I would like to move in with my boyfriend but my parents don’t
want me to – they are my guardians and I have to do what they decide. If I was able to, my
boyfriend would look after me and I would only need help during the day while he is at
work. It should be up to me, it’s my life.
Two or three years ago I had some work for a few hours a month; I would write about
disabled people like myself and what I could do. I would like to find another job using
computers. I would like to write a book – to tell people about what I’d like to do, about my
life, my family, my travels, my journey - I would need help to do this. I have an iPad which I
bought 2 months ago and I love playing word games! Though I know words, I can’t
communicate these words well because of cerebral palsy, so I need help to say what I want
to say. So, one of my goals would be story writing, with assistance every day. I would also
like to do a course online about caring for cats.
I have not heard anything about the NDIS – I would like more information in a way that I can
access it.
What I want the NDIS to do for me:
I would like my care providers/ support workers to receive more training.
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I would like my care and support to consider my routine, not simply follow their timeline.
I would like to have my privacy respected.
I would like to be able to do some things for myself.
I would like a part time job using computers.
I would like to get support in order for me to keep a journal and write a book.
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Sarah’s Story.
I’m 23 years old; I’ve only ever seen one page of info about the NDIS that came in the junk
mail and that’s all I know about it; My story is not nice – I’ll give you the overview: in
Queensland 8 or 9 years ago I started going in and out of hospital, self-harm, suicide
attempts – next thing you know I’m being diagnosed with Asperger’s, depression, psychosis,
borderline personality ; I was diagnosed with 13 different disorders– no doctor can tell me
what I have which is driving me nuts- I have 5 main ones plus an extra 6–but I was eligible
for disability support; after 5 years waiting I still had no supports – there was nothing
available – but every year they sent more paper work to update information even though
nothing had changed.
3-4 years ago we (Mother, her boyfriend & I) moved to ACT; I had to have all new
assessments; every time I see someone new I have to tell my whole messy story all over –
information doesn’t get passed from one place to another; I was told I was not sick enough
to see a psychiatrist or anything; but then after 2 police-escorted hospital visits I was
eligible; after that I was supported by a mental health program and an employment support
agency; I haven’t had my meds reviewed in the ACT in 3 years; I went to a doctor for that
and spent half an hour retelling my whole story, because she hadn’t read my file, and I still
didn’t get my meds reviewed.
My mother and her boyfriend moved to Darwin a few months ago; I didn’t want to go and
was homeless for 4 weeks until with advocate assistance, was allocated public housing; new
part of the city means I have to go to a new mental health support program; it depends if
they have a place available - I haven’t been able to get there yet. The employment support
agency sent me to jobs I was not suited for; when I was being bullied by the boss at one
place, my agent told me to “suck it up”; the last job they sent me to I was doing domestic
assistance; I had to drive all over the place and never knew what I was going to be doing
until the morning – there was no routine – I had to fit theirs; I quit and the agency
suspended me; I haven’t heard from them since. I had a job I really loved, at the kennels
but the boss was a *** and I had to quit but I absolutely loved that job; at the moment I
don’t have any support – not mental health program or help for work.
My goals? All I ever wanted to study was palaeontology but I didn’t finish high school – I got
kicked out because of bullying – punish the victim; I’m too busy now doing volunteer work –
bible teacher (door-to-door); I do 40hrs/month but I want to get to 50hrs/month – just my
own goal; a friend does 70hrs month – I know I couldn’t manage that, I can only manage 2
days a week – but I’d like to get to 50hrs/month. I want a job; I want to move to
Queensland, to Townsville where my sister lives; I want to be close to my niece and baby
nephew; it’ll be expensive so I need a job; I need help to get a job; I also need a place to live
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when I get there but people don’t talk to each other – Housing here should be able to talk to
Housing up there.
I want to get qualifications; I started doing Certificate 3 in Companion Animal Services. I
lasted 3 weeks and I had to drop out; all the material was on-line and I don’t have internet–
it’s $15 on food, petrol or internet - and I need books; all they could do was put me in a
smaller class but the material was still all on line; the disability support officer didn’t show
up for my appointment. I’m not going to bother with TAFE again. I’ve done correspondence
courses before – I can do that – there’s a course from up in QLD but you have to have a job
with animals first and it costs $4000 up front; I don’t have the money;
I know what I want – I have my goals and plans – I don’t have the resources
What I want the NDIS to do for me:
I want to tell my story once;
I want to be able to live where I want to.
I want support to get work that I like and to stay in that work;
I want support to do more study.
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Leigh-Ann’s story.
I’m a 49 year old woman, who has been given a
diagnosis of schizophrenia. I have type 2 diabetes
and 10 years ago, a stroke affected the left side
of my body. These past 2 months I have been
living in a residential mental health program with
4 other people but I have to leave in a month
because 3 months is the maximum period you
can stay. I was at the hospital’s psychiatric unit
for 12 months prior to that – I didn’t like the way
I was treated there. I still pay rent on my flat but
I’m not allowed to go back there unless I’m with
a staff member. All I have here is my laptop,
guitar and 4 changes of clothes; I also wish I had
a bit more privacy. I have a meeting with my
guardian, advocate and someone from housing
tomorrow to sort out where I can live…
I’d like a downstairs flat with a garden, then I
could get a kitten. I love cats! I don’t want to be
around people taking drugs and causing trouble, just somewhere where I feel safe. I’m not
incapable with cooking and cleaning – I don’t want help with that; what I would like is help
with shopping and transport – for someone nice to take me out occasionally for a drive or to
the bush. It gets lonely; I’ve got a kind and generous nature and I wish I had people I could
hang around with and have conversations with, not just workers and co-residents.
When I was 7 my mum died and my dad couldn’t take care of me and my brother – so I was
put in foster care – this couple looked after me, they were very strict but they were loving as
well. I used to run away back to dad and eventually I left my foster home and school at 15
and then mental health got involved. I’m going to be seeing a new psychiatrist because the
one I’ve had for the past year has moved – that’s good because he was a bully - I missed an
appointment, the police came, handcuffed me and took me to hospital. I had a good
relationship with my previous 2 psychiatrists – I wish I could have a choice of doctor. What I
would like with mental health services is not to be threatened, to be treated with kindness
and love, not to be pushed around, and to be respected. I enjoy painting and going on long
walks - my only vice is smoking cigarettes!
I’ve never heard about the NDIS. What I would really like is a part time job. When I was with
my foster parents I used to work at Kmart and also at the local chemist in the evenings. With
my new (second-hand) laptop I’d like to enroll in a Business Course part time for 6 months
at CIT. I studied hard at school and I like to keep myself busy – a job behind a desk using a
computer would be great, or I’d like to work in the evenings stacking shelves at somewhere
like Big W; working in a café does not suit me. I feel like I’m living below the poverty line –
after my rent and groceries, I am left with $60 a week. If anyone would give me a part time
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job, it would mean a lot to me – to earn and meet people. First though I need somewhere
suitable to live. I would need a bit of money to get started for clothing. I would also need
transport organised to and from work.
Sometimes I get stuck and need someone to speak on my behalf, someone to be there with
me, that I have a relationship with, someone that knows me – to say to potential employers,
yes she has a mental health issue but it is under control, and vouch for me. With the NDIS, I
would need help with planning and deciding on what my options are.
What I want the NDIS to do for me:
I would like to be treated with respect, just like everybody else does.
I would like to find somewhere suitable to live that is safe, and where I can have a cat.
I would like to undertake some training with support.
I would like to have someone to help me find suitable part time work, and also support me
to keep working.
I would like assistance with transport for my grocery shopping, and to and from work.
I want to be able to choose my own doctor.
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Stephen’s Story.
I’m 29 years old and live in a disability house with five other people. I’ve lived there for 2
years but I’m trying to move to a new place in the part of town where I went to school. I like
it there. My advocate is helping me with that. He helped me move out of my parents’ house
to this one, and now he’s helping me move to my next place. I couldn’t do that by myself. I
need someone to help me.
Sometimes when I want help the carers are too busy helping the other people. I ask them to
help me or take me somewhere and they’re always too busy. They say we can’t use the bus
for the things I want to do so I always have to do things on my own, and I get sick of always
being on my own. I’d like them to take us to the Cotter River or to Tharwa for a picnic, but
they’re too busy. They used to take us to the shops to look around, to have coffee … but
that stopped a year ago. I want them to do things with us. The old boss used to find things
for us to do, or he’d just do things with us like sit together out the front and have food, or
joke around or play music. Now it’s a lot more …. Well it’s not like it used to be.
My disability is anxiety, depression, obsessive compulsive disorder, and tuberous sclerosis.
Sometimes it’s hard for me to be out in public. I get frustrated and angry because I think
people are looking at me in a funny way. But I’ve been much better lately. Two years ago I
got new medication and it makes me feel much better. There are tumours at the back of my
brain and in my throat from the tuberous sclerosis. I smoke cigarettes. I have since I was 18
– that’s a long time – but I’m going to give up at the end of February. I’ve promised people
and I don’t want to let them down.
I used to go out clubbing and stay out late, but I don’t anymore, I don’t see the point, and
my parents don’t like it. It caused a lot of trouble last year. I don’t have to do what they say,
but they are my guardians and if I want them to do what I want, then I need to do what they
want, too. I have to respect them as my guardians. I go fishing with my dad and we visit lots
of places – Lake Eucumbene, the coast, Port Macquarie. We went overseas to visit my
mum’s relatives, just Mum, Dad & me for 6 weeks last year, and I’ve been on holiday to New
Zealand. I’d like to visit places I haven’t been yet – explore country towns in Australia like
Wagga. I’d like someone to help organise that, and go on holiday with me.
During the day, an ordinary day, I listen to music on my iPod, I watch TV, I go out … I try to
keep myself busy with other people. There’s a lady who helps me organise activities and
she’s arranging for me to play basketball and to learn to cook – I’d love to try and learn to
cook.
I’d like to learn how to read and write. I can write my name and, if I haven’t got any
problems, I can write my address, or if I have it on a piece of paper I can copy it. I was in a
disability class in a regular high school and (secondary) college and it was ok, but I didn’t
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learn to read and write. I had tutors and I went to TAFE but I still didn’t learn. If it was
possible, I would still love to learn.
And I’d love to have a job. Not gardening or lawn mowing – I’ve done that before and I don’t
like it. I’d like to do office work – shredding paper, delivering letter - helping people.
What I want the NDIS to do for me:
I want to be part of the team that decides things in my life. I want to be listened to and
respected, just like how I’m learning to be with my guardians.
I want to know there is someone I can contact when I need help to sort things out.
I want help to find paid work that I enjoy and that is helpful for other people.
I want to learn to read and write
I want someone to help arrange holidays where we can explore places together.
I want carers to be flexible and support me to do fun, relaxing things, not just the basics.
I want help to go out and about, to be included in the community like other people do.
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Stephanie’s Story.
I’m 44 years old. I suffer with Sciatica
and Achilles tendonitis in both legs,
though the right side is worse; I was
diagnosed with arthritis about 15 years
ago and I also have problems with
dermatitis. I’m on high doses of
medication – a new drug I’m on isn’t
working and I’ve been told that I need
an operation. I messed with alcohol and
drugs when I was 21 - I was suffering
from endometriosis and then at 27 had
to have a hysterectomy.
I have to wear special shoes – they cost the government a lot – they help me not to lose my
balance and that’s what I’m meant to wear day in and day out – the same pair of shoes. I
know other people who have to fund their own footwear, that isn’t fair, the paperwork is
tedious and shoe fittings are done in Sydney by appointment. I funded a second pair of
shoes, but they were made incorrectly so now I can’t wear them – it was such a waste of
money. I’m uneasy in my own home because of the number of falls I’ve had.
It’s hard to understand what it’s like for people with disability unless you’ve got a disability
yourself; it’s been 10 years since I’ve showered without footwear. I wish that people in
positions (of power) would look past our appearance and see us for who we really are, what
we really want and what we can do – people say I’m angry but I’m in pain. I was very young
when I started using a walker, sometimes I can only shuffle along or drag my right foot along
and people stare at me; it’s the looks that get to me.
In my case I’ve found because of my age, I’m either too young to be eligible or too old for
current services. I’ve been living in this house for 10 years and it’s been a battle. Because of
the cost of my medication and other bills, my weekly cleaning is provided free of charge
because even though I need it (I can’t bend to pick things up), I can’t afford it – I’m very
thankful for this. Community transport is also helpful, but for some people it comes down to
having the $3 on the day.
There’s a saying, ‘don’t let your attitude be your disability!’ I opened up a food coop with a
tenant participation grant. I wanted to give back to the community because I have been
helped so much. At the moment, it is not in operation. I do volunteer once a week at
another food coop; the yellow van days are the best because people know you can actually
get some fresh fruit and vegetables that’s affordable - without this I wouldn’t be able to eat
healthy. The day I volunteer, there’s also a community meal served. I feel better when I help
someone – I feel like I’m out there giving back to the community, even if it’s just 3 hours a
week.
For the past 7 years, I’ve been seeing a counsellor through a community based support
organization – she has been a really important part of my support and an inspiration too.
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But now they’re winding up and I can’t see her anymore. I refuse to tell my story again to
another person – you can’t deal with today’s problems when you have to discuss
yesterday’s problems over and over again!
Similarly with advocacy, I was dealing with different services, and now I’ve been working
with someone who I get along with and really connect with – she’s helped me more in a
year than I’d been able to work out with housing by myself in 13 years. Because of my
dermatitis, I was able to get a spa bath installed, but now I need equipment to help to get in.
A housing assessor came to see me; he agreed to have it fixed but only if I signed a statutory
declaration that I would not request any more work to the house. At the moment if I speak
up, I’m considered non-compliant! Who are they to judge and decide! I should also be
entitled to an explanation regarding decisions they make. I feel that I’m answerable to the
government because of strict guidelines; I hope the NDIS is answerable to clients in some
way. I’m not managing, I’m in constant agony most of the time; there are lots of things that I
need and that’s when I have anxiety and panic attacks – so I need someone to act on my
behalf.
I heard about the NDIS on 2 occasions: once when I attended a carers’ information session;
the other time was hearing about it from one of the volunteers of the Food Coop who
seems to know a lot about it. I’d like to know more about it – but not through the Internet - I
want to be able to hear it and discuss it with others. The lack of information about current
services and options that are available is bad enough - under the NDIS this should be clear.
What I want the NDIS to do for me:
I would like the choice to decide who provides services to me, someone who I develop a
relationship with, someone who I believe in and I get along with.
I would like easy, personal access to information about services and options that are
available to me.
I would like to see more community education to increase awareness for people of all ages.
I would like to continue to access advocacy services to help me voice my concerns and act
on my behalf.
I would like to continue volunteering and helping others.
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Rocky’s Story.
I’m 28 years old and my mum says I’m a miracle! Just after my 21st birthday the twitching
started. For seven years I couldn’t stop twitching, moving, kicking, swinging my arms; and
when I would stand up I would arch back like a banana. If I lay on the floor, my hair rubbed
off the back of my head in 15 minutes because of all the movements. I had to go to respite
care, and about three years ago I moved into a group house that had carers. Then Mum said
to me, “Do you want brain surgery?” and she explained everything to me about them
putting electrodes in my brain and a pace-maker in my chest to stop all the movements, and
I said’ “I’d love it!” because it would be better than the way I was treated … it was really,
really bad.
So now I don’t twitch or arch back any more, I can sit in an arm chair again, or a chair at the
table and feed myself with a knife and fork, I can cook. I moved back home because I didn’t
need all that care and I looked after Mum after she had her knee operated on. I’ve started
back at my old job, too. That’s why my mum says I’m a miracle!
Dr John saved my life. He said, “Take her off Risperdal!” It was a child psychiatrist who put
me on it – I went to see him because I was in trouble all the time and getting suspended and
stuff. He prescribed Risperdal and that caused all the movements. I hated it! I went from
98kg to 49 kg , I was like a pencil - that’s how much I moved! I used to say, “Mum, can I
come home?” and she say, “No Rocky, I don’t have the necessities”. But she used to bring
me home 3 days a week when she didn’t have to go to work. Mum and I had quite a few
trips to hospital, too.
One morning a carer force-fed me weet-bix. I told her I don’t like weet-bix but she said
“Eat!” That night I couldn’t breathe. I was in trouble with the staff and they locked
themselves up in the office. I felt really sick and started coughing. They rang Mum and we
went to hospital. I stayed for a week; I had pneumonia. They messed up my medications in
hospital as well and I felt really sick because of that. When I came out I had to go back to
respite. The carer said to me, “Are you going to be good?” and I said yes, but I hit a boy by
accident; I couldn’t help it with all my movements and flailing about, but the carer said I was
violent and there was trouble. I didn’t mean to; it sucked.
There was lots of bad stuff like when they wouldn’t listen to me about when to give me my
meds, or when I told them they had already given them to me. They’d say, “No” and then
Mum would find two lots missing from the Webster pack, and they’d say, “Oh, we’ll give the
carer more training”. And they’d try to tell me that I couldn’t tell people things that
happened, and they’d be horrible to me if I did. I didn’t feel safe. They treated me like I was
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a child and stupid. Not all of them. There were three who I really liked and who listened to
me and helped me.
Before I had the surgery I got an ISP (Individual Support Package). Mum had to fight for it,
and to fight to manage it herself. We still have it because we’re not certain how everything
is going to go and Mum wants to make sure that I can be independent like before the
twitching started, so she makes sure that I have good people to help me and she trains
them. I have a friend who I go out to have coffee with, or we go shopping, or make things,
and other stuff that’s good to do. We do normal stuff, she doesn’t treat me like a child and
she lets me do things for myself.
What I want from the NDIS:
I want Mum not to have to fight to get and manage my ISP.
I want to choose who helps me so that I feel safe and listened to.
I want to live independently in my own place.
I want assistance do more tasks at work and to work full time.
I want to travel, and to visit my friend in Sweden.
I want the opportunity to show people what I can do.
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Leanne’s Story.
I’m 46 year old. I have cerebral palsy and
need 24 hours care – so for the past 3 years
I’ve been living in a residential aged care
facility. I was in a hospital for 9 months
before this – I didn’t want to be there for
the rest of my life so I agreed to come here.
This hasn’t been the easiest road – I’m the
youngest resident and I don’t fit the mould
of being in a nursing home.
I’ve only heard about the NDIS briefly on TV.
What I would like in the future is to live with
more freedom; where my privacy is respected; I don’t want to tell them my every move, be
monitored. My goal is to live in the community in a way where my needs are met and where
I have more freedom. This would mean appropriate accommodation with 24 hour care –
either having a house where I live with someone, or in a group home, provided I have more
freedom and privacy than I have now.
Another consideration is the staff I would employ – I need to have 2 carers assisting me at
times. At the moment there is one individual from one organisation and another individual
from a different organisation that I would employ if I had the choice – I want to be able to
choose who provides my care. In my current situation I don’t have a say, even if we don’t
get along. My needs have to fit in with care, rather than care fitting in with my needs.
I want to be able to see how much funding I would be entitled to so that I can plan. My case
is complex - I wouldn’t want to plan and then find out it doesn’t work. I need to make sure
that the funding amount is assured and that it will be ongoing.
When I’m out and about in my wheelchair, it’s as if people don’t see me –they speak to the
person with me instead. I’m glad I can have my say with the NDIS – this is the first time that
I’ve been given an opportunity to voice my opinion about matters that have an impact on
my life. I hope there are people with a range of disability on various NDIS panels and boards
because our opinions are important.
For me it’s new to have choices – to be given options. I want to be assisted by an advocate
who is outside of the system because my case is complex.
I have questions about many things regarding the NDIS – if I live in community, will my
equipment costs be covered under the NDIS? For instance the air mattress, bed, overhead
lifting support and hoist that I will need, as well as my catheter bags - will I have to pay? I
like the idea of choice, but I want it to be real choice – not limited by what others have
already determined.
With the NDIS, I don’t want my expectations to be raised and then not be realised. I am a
young woman with a significant disability who wants to be able to have a social life and
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pursue my interests – however because of the residential aged care charges, I had to apply
for Financial Hardship Assistance so that I can afford a weekly cup of coffee and a sandwich.
What I want the NDIS to do for me:
I would like to know upfront how much money I am entitled to so that I can plan
appropriately.
I would like to be in control of my own funding.
I would like to decide who will provide care for me and what services I use.
I would like an assurance that there is continuity so that my needs are met in the long term.
I would like freedom, privacy and space in my future living arrangements.
I want to have genuine choice – not limited by what others determine is right or best.
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Kreesen’s Story.
My name is Kreesen. I came to Australia from New York in 1994 and was a high school
teacher until I had a stroke on 31 October, 2004 – Halloween – some trick! At the time of my
stroke I was out in public and people who saw me thought I was drunk so I sat down on a
bench and tried to look busy by opening and searching in my knapsack. But I realized I had
to get home so started walking back to my apartment. Once there, I had to struggle to get
my key out of my left pocket with my right hand because my left arm wasn’t working at all,
and ended up on my knees, leaning against the door before I managed it. I fell on my bed
and knew that if I didn’t call the hospital I would die but when I managed to get my mobile
phone out, the battery was flat. I remember thinking, “What a pain in the ass!” So,
struggling and nearly falling off the bed and getting really pissed off, I managed to get the
charger plugged in and dialled 999 before I remembered 000. A voice said “Hello, how can I
help you?” but I couldn’t talk and they cut me off. I dialled again two more times before
they traced my number and the ambulance came. Then I passed out and woke up in the
hospital where I stayed for two years before I moved in here (supported accommodation) 6
years ago. I’m restricted to this (motorised) wheelchair and am using a microphone and
speaker to catch my very soft and breathy voice, with half-formed words that I struggle to
form, and you struggle to interpret.
In my view, rehabilitation has been limited. In the hospital and in the community they make
the judgment and decide when there’s nothing more they can justify doing, and you are
rejected from their service. But I have paid privately for physio and other treatment and I’m
starting to take steps again. I want to get out of this chair. If I have the control the NDIS
suggests, I will employ carers who are well trained and perceptive and can work with me on
my rehab, especially first thing in the morning. That’s when I need to be going to rehab. If I
had that I would improve. I have the incentive, yes I do!
I know almost nothing about the NDIS, only what you (ADACAS) have told me and given me
to read. The Principles make me think of the Magna Carta! It’s good that some people care,
and I think it will be better for me.
In general, carers need to have more training to work with, and take care of people with
disabilities. What’s needed is very simple, very basic, but it’s very hard for me to explain, to
tell them even simple things. For example, someone who’s been here for six months should
know how to do things, like getting me to bed: It’s very easy – takes no more than five or
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ten minutes to pull me up and over on my side, ensure my bedside table is within reach, and
that I have the call bell. I’m a teacher, and I have been trained to watch people very closely.
When someone tells you a thousand times that they don’t get it, then they shouldn’t be
trying to do it by themselves - it’s not fair to them or me. And you can’t put a new person
with someone like that – that’s just poor management.
On the other hand there are staff who are very intuitive and perceptive. They will ask, “How
can I help you get comfortable?” I tell them, “Look at my body in the chair” and they look
and know what to do. They move me just this much and then it’s better. They’re the sort of
people I would choose to have around me. I know I can deal with people and situations. I’m
very patient. When I was a teacher, the kids would tell me things before they told their
parents. It’s not just that they trusted me but that I knew how to handle it. I’d tell them, “If
you don’t tell me, I can’t help you.” Now I need help, and I need to trust that the people I’m
telling, the NDIS, are actually listening to me and know how to handle it.
What I want the NDIS to do for me:
I want to live in my own home and employ the staff that I want to have around me;
I want to receive the rehabilitation I need to be able to walk again and get out of this
wheelchair;
I want my friend, who currently dedicates a huge amount of time attending to my needs, to
have a ‘good life’, too.
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