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my name is martin foreman 43 years old and spina bifida
feel the NDIS is important for queensland it gives people
with a disability a voice.
cerebral palsy league of queensland
Hello my name is Julie and I am the primary full time carer of my daughter. She has 2 rare conditions that have her needing total care for ALL of her needs. This is very physically and emotionally taxing on me as i am soon to be a single parent. my biggest issue is that there is NO RESIPTE facility in Bendigo for Children. I have to travel to Melbourne to get a break, which isnt very often. My need for a break from the demands my daughter requires would allow her to stay with me as long as possible, but I dont see that being possible if the NDIS doesnt come on line VERY SOON for us who so desperately what to keep our children whith us for as long as possible. I cant express enough how important the NDIS would be to myself and my daughter’s quality of life.
We have a 3.5 year old son, who was diagnosed with Cerebral Palsy 2 years ago. We have been with CPL since April last year. I find the entire system overly complex, extremely stressful and full of bureaucratic barricades. My issues are around the bureaucracy and barriers we continually face with all agencies that want their cut of his funding.
He was born 26weeks 4days, we were lucky that we have amazing doctors who kept him alive. Daily we battle with departments around his needs. The main catch call we hear is there is only so much funding. BUT there seems to funding available for him for services I don’t want, why can they not be reallocated to services that are needed for the individual family needs? I mean each persons disability is unique, each has varying needs. So why does the system not support this?
My dad became disabled after having a limb amputation as a result of diabetic complications six months ago. He is 67 years old and after having struggled with diabetes for over thirty years his body and organs are failing him. Diabetes is a silent killer that makes it’s most lethal mark when a person’s body is least able to recover.
My mother is now my dad’s full time carer. Both my parents are pensioners and so they do not have a lot of money to rent things like ramps, wheelchairs, commodes, monkey chains etc. They also rent, so they cannot make alterations to thier home. My mum is becoming depressed with thier situation, all they wanted to do was retire in peace!
It’s time to make the NDIS real because it will help people like my mum to get the carer support she needs. It will help people like my dad to get a proper wheelchair and ramps so that he can be more independent.
It’s time to make the NDIS real because my mum and dad have spent all thier lives working for the Ausralian community. They do not deserve these unecessary pressures in thier retirement years. Please help them.
HI my name is Simone Lee Stevens, I was my parents first born child. I was a healthy newborn baby, When I was four months old I contracted septicaemia (Blood poisoning) which meant now my life before living it would now be with a permanent disability which is Cerebral Palsy.
Life for me is fighting the system for simple things in life to live on my own which I have a Support and Choice Package though it is very restrictive I have 21.5 hours a week though need an extra ten hours to cover daily requirements “I’m not ungrateful though it would make life much easier for me as well as my carers involved.
Not only that I have a 5 y’old electric wheelchair which needs replacing urgently though due to lack of funding this means I have to wait.
This is why I became a NDIS campaigner to educate the public as well as MP’s around the country to say things need to change and now especially that the carbon tax has come into action my pension has decreased to try and compensate for the new expenses. When the NDIS does come in this will mean I will be able to stay in my home and continue to do my voluntary advocacy work which advantages over two organisations 20 hours a week (Not including 19 hours on the campaign) with James O’Brien and a few coordinators in my home town of Geelong. I would also like if the launch would be in Geelong as I would love to be apart of that experience and to be able to say “I was apart of the trial”
To whom it may concern,
The following letter was written by our 9 year old daughter with Ehlers Danlos Syndrome. Please read it, and if you don’t know about the condition take 5 minutes to do a google search. Maddison is now trying to raise awareness for her condition. It is a debilitating condition with little coverage in the media, if any. There is no cure, treatment is supportive at best. May was Ehlers Danlos Awareness Month and we tried to get the word out there but unfortunately we failed. She has now written to the minister of health asking him to help get it out there and she also written this letter to the world and asked that I email it and ask people to keep emailing it to help get awareness out there. It is a rare genetic condition that results in a collagen deficiency. It therefore affects her ligaments, organs, eyes, stomach, heart, skin and blood. She is very hypermobile and dislocates joints randomly. Putting on a jacket can dislocate an elbow, walking can dislocate an ankle. She is a very articulate young lady despite struggling with the everyday tasks required to attend school. Writing hurts and causes dislocated fingers as well as fatigue, she is in constant chronic pain. She is strong willed and determined to make a difference. Please email Maddy (email@example.com ) to let her know you have read her email and please pass it on to those you know. Lets help her get Ehlers Danlos Syndrome into the media!
Thanks for your time
Simon & Kathy Parker
My name is Maddison Parker, I am 9 years old and I have Ehlers Danlos Syndrome. I am wanting the world to understand Ehlers Danlos Syndrome so am sending this email out. I have some questions for you all! I would like to know why no one cares about Ehlers Danlos Syndrome? May was Ehlers Danlos Awareness Month and no-one really cared because I didnt hear anything about it anywhere! My grandma even sent a letter to A current Affair telling them it was the awareness month and again, nothing happened, they didnt even reply!!
A week in my life is full of pain. I’m constantly heating up my heat pack, and needing pain medicine. At school i cant finish my school work because Im in so much pain and all my joints dislocate. In case you dont know Ehlers Danlos syndrome is a connective tissue disorder that makes all my joints flexible, and pop out for no reason. It makes me very tired all the time, I cant play with all my friends because when I run around my joints pop out and it hurts and I get really tired. It doesnt just make my joints pop out but it effects my balance, my eyes, my heart, tummy, skin and even my blood. It is a really painful thing to have. It’s not fair!
Im in and out of hospital and my wheelchair. I dislocate my joints every day and have pain all day every day. If I break a bone it takes me 3-4 months to heal when a normal person only takes about a month to heal! And my muscles disappear when the bones heal.
Im sick and tired of everyone saying there is nothing wrong with me because I look fine and that its all in my head. For lots of other disabilities you are trying to raise money to find a cure. But NO, not for Ehlers Danlos Syndrome. As I said before, I am in and out of hospital, I know every corridor of the childrens hospital and the sunshine hospital. Even some of the doctors say “You again!” So I want to know WHY arent you trying to raise money to help cure my Ehlers Danlos Syndrome???? The doctors dont know much about it and cant really help me.
If I could change one thing about the world it would be the way people understand Ehlers Danlos Syndrome! I want to know WHY no-one cares and WHY no-one is trying to raise money to find a cure! WHY don’t I matter??
From Maddison Parker
My name is Kyla Downe, I have been working in the disability field for 4 years. In that time I have had a few different roles including, education support (ES) at Latrobe special Development school, a support worker who provides personal care, and a team leader for organisations such as Interchange. Four years is not a very long time, but in four years I have already seen so much, I have advocated for people’s rights I have done my very best to help people who have disabilities in anyway I see I can, and now it’s by supporting the NDIS.
I have currently been studying my diploma in disability and I can guarantee every class I have, we speak about our clients and their rights and how none of their basic human rights are being met. We speak about how there is such a big push to treat people who have disabilities as equals, but so far this has not been the case. Australian people who have disabilities are exactly that, AUSTRAILIANS, who need the support of the NDIS.
I have worked with a wide range of clients and a story that upsets me and is very common, is a client who could not afford to buy the equipment he required as he got older. He had out grown his wheelchair and it was giving him blisters and he had developed scoliosis, his family could not afford to replace the chair and had a lot of trouble trying to get funding. As his worker I had to put him in the chair everyday watching the pain he was in by the expressions on his face, just so he could attend his day placement, and access the community, after several months a decision was made to end his pain and to stop using the chair until something else could be arranged. He missed out on placement and accessing the community for 5 months, until his family came up with the money to get him a new chair.
Its time to make the NDIS real!!!!!! Support our Australians.
I am a parent of two girls both of whom have a disability. My 15 year old has an Intellectual disability with multiple issues and my 11 year old has Aspergers. Two years ago I became unwell and ended up having to have open heart surgery. This became a very trying time for our family and was very unsettling for my two daughters. My 15 year old has since suffered heightened anxiety and separation issues. We were unable to access respite for her at the time and were very lucky and thankful that family members were able to step in and support us during this time. I have since been trying to develop my daughters independence and teaching her skills so that she can feel confident as a person. I need help from organisations as she needs to learn to separate from me, her mother. I have struggled to access organisations that can take her now. We have been told that she is eligible but that there will be a 2-3 year wait to access the program. By then she will not be eligible for that program. I am in the process of doing a person centred plan with her and she is quite excited about this. But we have also been told that we have to wait for the funding to become available. Even in crisis the supports are not available. She needs the support now not in 3 years time. I would love to have a system that is fair, accessible and provides support for earlier intervention. I support what is proposed and hope that not only will services be more accessible but that training and retraining and increased employment in the area of disability will happen. It’s time to make the NDIS real. Let us make every Australian count.
As I was completing my VCE in 2011, I intended to study a Bachelor of Arts at Melbourne University in 2012. I had always wanted to study Law; however I didn’t think I would achieve the ATAR score required to do this. Nonetheless I studied like crazy for my exams, aiming to get the score I needed for the Bachelor of Arts, majoring in Creative Writing which is another passion of mine. When I received my score, it was the biggest shock of my life. Not only had I achieved a score high enough to study Law at Victoria University, also in Melbourne, I had furthermore achieved the highest score for Legal Studies out of Ballarat, equal with a girl at Loreto College, a private school. Needless to say I was overjoyed, especially when I received an offer from Victoria University. I accepted and intended to commute from Ballarat to begin with, and eventually move to Melbourne.
However, this is not how it turned out. I have a disability called Cerebral Palsy which means that I use a wheelchair, have limited use of my hands, have a speech impediment and require assistance with everyday tasks. For this reason, my case worker applied for funding from the Department of Human Services (DHS) to employ carers from Melbourne disability support agencies to meet me at the train station and accompany me at university. We were granted 16 hours worth of funding per week which was fine until the two support agencies pulled out within a day of my starting classes.
Hectically, my mother and co-ordinator at our disability support agency in Ballarat managed to organise my carers in Ballarat to come on the train to university with me the following day. This added another 6 hours travel time per week which we did not have funding for, and was only possible due to funding for personal care I had not previously used. Yet, this was not a long-term solution and it could not be guaranteed that I would have enough funding to continue my studies next semester.
Meanwhile, I still wanted to move to Melbourne as the early mornings travelling were taking its toll and just like any 19 year old uni student, I was and still want to live independently. However, I was told that the only way I could move out of home is if I am put into shared disability accommodation as it wouldn’t be likely that I would be granted enough funding for the care I need to live independently. This is unfair for many reasons including the fact that I couldn’t choose where I live nor who I live with. I have tried these services for respite purposes and have found them unsuitable for me personally for many reasons. Not receiving the independence I desired, coupled with the uncertainty of being able to study next semester, led to not being able to concentrate on my study and consequently I deferred university until 2013. It is still unknown whether I will gain enough funding to start my studies again next year.
I’ve never asked for much in life. Not walking doesn’t bother me. Not being able to use my hands doesn’t bother me. But not given the same rights, opportunities and choices as everybody else bothers me. My hopes are that the NDIS will become a reality and enable me to continue my studies, access support in employment, and possibly achieve my dream of living independently.
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Upcoming EventsUpcoming Events
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In the mediaIn the media
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- Premier Barnett on the NDIS & COAG 5 December, 2012
- Excellence in Disability Reform -Samantha Jenkinson in her own words 29 November, 2012
- Asking our MPS to stand and deliver 26 November, 2012
- Media Release: CAMPAIGN REJECTS NDIS COST SCAREMONGERING 15 November, 2012