National Disability Insurance Scheme (NDIS) Costs

Christie Centre Inc

The Christie Centre Inc founded over 60 years ago by parents in the rural region of Mildura established a solution focused, place based service to meet the needs of their community. Christie Centre Inc continues to do this offering and providing person directed opportunities to meet the individual needs of people living with disability. Our experience and evidence shows that when people exercise choice and control over their lives the need to utilise tertiary service is reduced. Our decision making is informed by the feedback of people, their families, the community and other stakeholders that when people are encouraged to live their life as social, economic and participating citizens the whole community benefits. The NDIS is a vital and long awaited shift removing the inequity of rationed funding and ensuring that all eligible people are provided with the range of supports to live a good life, a productive life and one that is on par with the rest of Australian society we ask for no more and no less than what is equitable and fair. The challenges with the roll out and the uncertainty the political environment has been creating distract us from embracing the most fundamental shift in societal thinking about capability and citizenship and has the potential to derail the benefits for so many. People with a disability are not burdens on the tax payer they are citizens and with support to meet their needs contribute broadly to the fabric of Australian society.

Anne Hansen

As my role as a disability advocate, I have seen the life changes in people with disability who now have NDIS funding. They are now accessing community, having a good life and have hope for their futures. The burdens are off the family, some aged carers, and there is job creation. Broken wheelchairs are now being replaced and people who never had wheelchairs, now have and can access the community. I now see happy people.

Lorraine Rodrigues

The NDIS to me is knowing that my son will have a future of his own to look forward to if I am unable to care for him for whatever reason. It is his opportunity to live his life to the fullest without having to depend on me to take him out, access community services and events, be in the company of his own age peers and be his own voice. I would like to see that such an endeavour is not misused or grabbed at from a financial perspective but is held accountable to the highest standards of delivery so that our children truly benefit from it.

Ann Verran

I have twin Grandsons born premi with Special Needs. One Heart issues (two open heart surgeries) and the other Cerebral Palsy. My Daughter is a single Mum and relies on family support to a great extent. This we give willingly, but her extended family is aging and her son with CP need the be in a situation where he has outside support if anything happens to her. He has had extensive surgery last year and the extensive costs of rehabilitation are funded by my Daughter with funds raised in her community. My Grandson can live a fulfilled life if he is given assistance. His CP is physical and he is determined to do everything his Twin does. This includes playing soccer in his walker, swimming with the local Orca Swim Club and "running" his school Cross Country in his wheelchair. He participates in everything. The NDIS will allow him to plan his future and gain his independence and continue to be a valued member contributing to his community. He has the same rights as all other Australians and his dis-ABILITY should not hold him back. He is in mainstream at school and the best thing about his inclusion, is the attitude of the other children in the school. He have been an integral part of the school since Kinder and his classmates learned very early on that he does not do sympathy and is fiercely independent and competitive. His and other children with special needs inclusion in his school has opened the eyes of all the other children to those with a dis-ABILITY. They treat him as a friend, a competitor and the best thing, just another kid. They will help him if needed, but it is just a matter of course. It has opened the eyes of others to someone with Special Needs. He does not see himself with a dis-ABILITY. In his case it is definitely a ABILITY. The NDIS, properly funded and working would make a huge difference to his quality of life.

Wendy McAra

My one and only grandson, Leo, turns 12 this month. He is non-verbal, severely autistic, and can do very little for himself.

His parents, devoted as they are, are exhausted, stressed and struggle to pay for carers to allow them to lead a vaguely normal life.

You would understand that the financial as well as emotional strain is huge. This is not a responsibility or future any of us would choose for ourselves. Those of us who have escaped such a fate should surely open their hearts and contribute some support to turn what would be a living hell into a possible, if far from normal, life for his parents, and family, like me, his grandmother.

I emigrated from South Africa hen my children were under five. I so admired the generosity of Medicare and Social Security and I have been, and remain, proud to be Australian. The NDIS is a fine and socially responsible, caring initiative and is another move to uphold the decency of The Lucky Country.

Thank you for caring, and doing the right thing.

Kindest regards,

Wendy McAra

Claire Galea

I am very grateful to the NDIS for the increase in funding I have received for my Asperger's son - I cried. However, my euphoria soon turned to disappointment when I realised that I cannot spend it on anything meaningful or long-lasting in terms of therapies that can actually make a significant difference to his life. I cried again. If I want to pay a carer to take him to the zoo every day for a year, then that's absolutely fine - the funding's there for that... if he wanted to do it... which he doesn't. But clubs and groups that he actually wants to join? No. Therapies that can actually prevent him from getting into trouble in class at school? No. Therapies that can help him understand conversations and improve his social skills? No. Learning support that can give him the skills to cope at school. No. Asperger's IS a learning difficulty - it's not a consequence of - that's what it is. Short term memory issues, sequencing issues, organisational issues, processing issues, auditory issues, sensory issues, comprehension issues, inference issues. THAT IS ASPERGER'S. So how on earth can you not provide learning support for it - this affects their every day life. Asperger's kids are usually of above average intelligence but below average academically. Why is that? Many of them end up unemployed. Why is that? If you don't want them claiming unemployment benefit or disability allowance for the rest of their lives, then please, please, please let us put the funding now towards therapies and programs that can help them at school to reach their intellectual ability so they can go out and get an education/job and make a meaningful contribution to society. Even Einstein was expelled from school.

Alexandra Pankhurst

Hi!! I am a 64 year old Mother, on my own, I have a son with Down's Syndrome 20 years old, my last child. I do not receive any informal or family supports so I desperately need the NDIS due to my age so my son can continue to gain independence, learn more social and living skills for his future for when I am not around. Due to my age, I get very tired so the NDIS is desperately needed to set up transport so my son can access all the organizations and support that I have been very proactive in for him to participate without having to rely on me to do all his running around. More Community access is needed for him in a social group. My son is placid and is well adapted to accessing the wider community always with the need of a support worker so he will walk straight into the NDIS arrangement. I have been under the YLYC and been managing my own supports for my son with great success so this has given me the experience to cope with the NDIS. Can't wait. Thank you.

Erin McCrea

My ten year old son has a diagnosis of Autism and Hearing Impairment. I have sought support from Disability Services Queensland, the Local Area Coordinator for Disability Services in my local area and Deaf Services. I have been advised that there is currently no support available in my area, though my son can have 8 AUSLAN lessons for a reduced rate of just under $800. The advise I have received is that I need to self fund any therapies or services until the NDIS comes to our area (mid-2018).

At the moment, it appears that those of us who are not yet in areas where the NDIS has rolled out, are at a significant disadvantage. This is further impacted by Centrelink rejecting an application for carer allowance, which I am in the process of appealing.

Mike Lawson

I care for my disabled wife 24 hrs a day 7 days a week. I know for a fact there are many other carers in a similar position - ie - working for an incredible amount of time doing the caring/nursing of their loved ones and getting a crap pittance (carers pension) for it. That is a joke, given the hours an average carer does in caring. I do get some respite breaks, but compared to the break 'normal' workers get, we carers mostly do not get that. We (carers collectively) save the government billions of dollars a year by caring/nursing our loved ones at home. As far as I concerned, we work for a pittance for the amount of time and effort we put into looking after our disabled loved ones. If, we as carers, dumped our loved ones on the steps of Parliament House and left them, the politicians would collectively s---- themselves. Having a better system whereby the carer and the disabled person is better looked after, is a must.

Michael Hessenthaler

I am the 66 years old father and carer for my daughter that is high level quadriplegic and we are to finally receive help from NDIS soon here on the mid-north coast of NSW. I have to say that our initial elation about what NDIS will mean for our lives is more and more replaced by anxiety and worry because we read and see many stories of short comings, restrictions and of course endless political games they play about funding. There will not be enough to go round, there will be more bureaucracy to overcome, there will not be the opportunities for my daughter that she never had, but hopes to achieve when she has more help. I worry I am running out of time and the NDIS will not deliver what originally was intended by some people inspired by humanity and common sense.

Please don't allow political pressure to diminish the funding. Have a realistic look at the relief it's brought many people already and the worry and limitations that some, like us, are looking forward to. Life with severe disability is tough and funding sufficient support and equipment is the fair and decent thing to do. And providing it without bureaucratic and political obstacles.

Thank you.

Brigitte Krstanoski

I am a mum of a very disable young man 33 yr old who needs all his needs met by me feeding changing showering all of his needs. The NDIS has made a huge difference in his life so far but i put the hard work into it with help from a very dear friend it took months to prepare for his turn and the outcome was great he now can enjoy the life that he deserves like normal young men of the same age but he needs a Carer to achieve his dream he goes to a day program 5 days a week out on Sat and Sundays which he loves he doesn’t like the idea being home with the oldies , he will be getting the wheelchair that he needs maybe a forearm walking frame he is very happy now, i get fair bit of help from Australian Unity 5 days a week morning and night as my health is going rapidly and i cant care for him like i was when i was younger as the load is huge i do worry about his review when it comes up what will happen not far from my brain but Planner and Support Coordinator have told me don’t worry but I’m a mum and hard not to. I’m sadden for a lot of Disable people and their families aren’t getting the help they need like yesterday and aren’t getting it or there plains don’t fund enough and i see the stress there parents go through i thought the NDIS was to make life better for all? Please don’t cut funding from other places to fund the NDIS that’s not fare and the so called normal families will get their backs up on our Disable people that’s wrong. Our loved ones deserve a life freedom like normal people do or do they? Thank you.

Dale Kennedy

My son Nicholas is 32, profoundly physically disabled but high functioning intellectually. He is treated like a child in that day program hours are school hours and his group home don't have the funds or the motivation to do anything with him other than take him out once a month for a 1:1. He constantly watches DVDs and listens to music when all he desperately wants to do is go out into the community. NDIS has changed his life this year. We have been able to negotiate his costs with his day program provider and have been able to spend the residual funding on community access outside of day program school hours. He has been to two disco's on a Friday night and is planning to go to every disco every month between now and Christmas and he is going out for a few hours every Saturday with carers he has chosen to destinations he has chosen. Whilst this is still not enough for a young man of 32 it is way better than the 'ground hog' existence he had up until receiving his NDIS package. It has not been an easy journey learning about NDIS and what we can and can't do but just to see the smile on my son's face while out with one of his carers that he has chosen at a time that is not dictated to him and a venue that he has had input into make everything we do on behalf of him so worthwhile.

Nancy Donaldson

Ndis is important to my daughters future and any child who has a parent that can’t live for ever.

We need to know our children will be safe and housed for the rest of their lives .

To Malcolm Turnbull our children are an inconvenience to the taxpayers as he gets his perks and cashes in on his investments he gets .

We don’t choose for our kids to be born with a disability and we don't choose to ask for help but we need the help .

As carers we choose to stay with our children as long as life will let us and we choose to give them as much dignity and teaching as we can .

Looking after our children without help does take its toll and most parents especially ones only on a carers pension do it hard.

We need to choose food and rent over luxury always ,other than two days away in a row we have had no holiday and the rare bit of money needs to go towards their disability .

Our children can grow to be wonderful adults if given the chance and we need the help and peace of mind knowing they will be supported.

Kristine FitzGerald

This is my family, husband, blind, on blind pension and unable to work, son 30 yrs old Autistic, Intellectually impaired and epileptic..on DSP, daughter, 34, Aspergers, severe anxiety, depression cannot work. She has zero income because when she was on Newstart allowance she was expected to apply for 10 jobs a fortnight, she is in the last year of her PHD (PHD's are not study according to Centrelink so no study allowance for her)and has not time nor ability to apply for so many jobs, there are not 10 jobs to apply for in our rural region. I also have my elderly parents in a granny flat attached to our place, my father is 92 and mother 88 and she has Alzheimers disease. SO, this is my life, caring for 5 people, financially supporting my daughter and physically supporting everyone ( I also had cancer 10 years ago) No time to rest for me but I do work 3 days a week as a teacher aide for students with learning difficulties. We live from day to day with no savings at all and a mortgage, such a huge struggle. The way my daughter was treated at Centrelink was absolutely disgusting with statements like "you will just have to get a job DARLING" with no respect for her illness. No holiday for 8 years and no respite for my son. No NDIS in my region yet and the mental burden of not being able to make my son more independent and being able to live his life like other adults. No supported houses for people like Luke, only if you are rich and can afford to pay for support workers and accommodation. It is very very tough both physically and mentally.

Brenda Gillett

My adult son James (39 years old) who has an intellectual disability, lived at home until almost two years ago, when we then decided it was time for him to try to live as independently as possible without our total support - after all we are ageing, with hopefully 15-20 years left to get our 'boy' safe and settled: with a very small flexible respite fund, we received minimal support - support through a provider who was unreliable and who almost caused us to abandon the whole idea and experience. Our NDIS LAC heard our story, and we now receive substantial enough funding to help us in our quest for James' independent life without his parents, and with other's taking care of him. He requires 24/7 support, so we have a way to go yet. Support from service providers and us, his parents, is shared about 50:50 - but we are on our way at last. James just loves his own 'unit' and his new (and much loved) support person who is enabling James to become more independent each day; and is helping him to become more inclusive in his community. No more cajoling him to get on a bus with people he didn't choose to be with - and go on trips he couldn't really cope with, just so his dad and myself could have an overnight break. James also has used funding specifically set aside for a speech pathology assessment and is looking forward to catching up with the 21st century and the rest of his generation by buying an iPad with which to look at his photos and use a communication app to help him express his needs and wants. Thank you for the opportunity to share our story with you. It hasn't been an easy transition - especially for a couple of oldies like James' dad and myself. But James has taken to it all like a duck to water: which is a tremendous relief and joy.

Heather Batt

NDIS means freedom form the powers of money driven organisations who do not respect the personal needs of PWD nor the natural authority of the family. NDIS means the opportunity to have a good, ordinary life engaging in everyday activities like exercise, visiting family, enjoying things PWD specifically likes and engaging in income producing activities the PWD finds fulfilling and capable of doing. NDIS means family can be the most influential people in PWD lives again, encouraging and supporting PWD to embrace as full and rich a life as anyone in the community with support. NDIS means seeing the smiles on PWD faces again.

NDIS means a lot to me because l can get my own support worker and not through organisation

Merle Searle

Hi, My husband and i are carers of a young man with Spina Bifida and behaviour problems. In the past we have always had a struggle to access respite as he needs one on one support staff and his D.S.Q. funding did not cover the funds required for overnight stays or at best very limited. Thanks to N.D.I.S. he now has a funding package that allows much more support. This is very welcome to us as my husband has some health problems at present and we will need to be able to use respite during my husband’s treatment. We are very grateful that the worry associated with obtaining respite is now in the past. The N.D.I.S. has made such a huge difference to us and our young man on a day to day basis as we are in the older age bracket i.e. over 70 and now because of the extra funding he has support workers that can take him into the community . Please keep up the N.D.I.S. it is so appreciated in our household. We have been Troys carers for 31 plus years. Regards, Merle

Paul Clarke

I have A.B.I from motor vehicle accident. It has impacted my life greatly, I have short memory as I need help with that. I also cannot plan like I once did. I have anosima from head injury. I acquired a few fractured vertebrae and live with arthritis and pain. I can suffer headaches and migraines on daily basis.

I attend Headway Illawarra for fellowship and support. I also use Illawarra Brain Injury Service to talk it through with a social worker which is a good thing because it helps me stay on track.

Sally Shackcloth

My adult daughter's life has improved in many ways since she was a member of the trial group in Tasmania. An occupational therapist found that her bed was unsafe both for her and for the support workers dressing her. The physio review recommended a hip x-ray because of increasing mobility problems. The result is she is now having preventative treatment so her condition doesn't deteriorate. She now has regular time set aside to stand alone in her new standing frame. Standing is very important for many reasons especially for people who spend most of their time sitting in a chair or a wheelchair. Very importantly, she is now participating in an ongoing speech pathology program with an expert speech pathologist as she needs a communication system tailored to her needs. Up to now she has no reliable way to communicate. My husband and I are thrilled with the NDIS.

Denise Maindonald

My 19 old son with DS was unable to access post-school funding as he did a School Based Traineeship. Bryden needed full support whilst working as he is Hearing Impaired and there is a marked lack of understanding of talking to deaf people in the workforce. Bryden is now deemed as being able to work as he passed the course but jobs are not available. At present he is doing courses to learn how to be independent. I am a single mum and work full time. These course require Bryden to travel by bus, trains and trams to get to the courses which then teach him how to travel and be independent. We have had our successes but have also had our failures which have resulted in him being lost somewhere on the Gold Coast with a flat phone (he had to sit and wait at the bus stop for 1and 1/2 hours till the people met so he listened to music). I am learning on the spot the things that my son does not know such as 'On bus' is not the same as 'On the bus station'. We do not have NDIS here on the Gold Coast yet and I do hope that the funding is better organised than at present. I am trying hard to make my son independent but there is a gap present between for those young adults that are not high functioning and not more impaired. There are few appropriate courses for Bryden and those that are in place put Bryden in situations that possibly dangerous and are extremely stressful for me. This results in Bryden being left at home for part of the week while I work resulting in phone calls that he has decided to catch a bus to the shops but it went the wrong way and me trying to locate him on 'Find my phone' and then talking him through the situation. I raised my son to be confident and with the aim to him being as independent as able. He knows he is Down Syndrome and Hearing Impaired and is a proud advocate. We just need help to get him there and once there he will cost the government markedly less than a child that needs full time care.

Julanne Sweeney

When my granddaughter Isadora Sweeney was born with Down syndrome in 2002 , I left my beautiful home in Far North Queensland rainforest and my Innisfail High School teaching job and came to Adelaide to support my daughter and her husband who are wonderful parents with extremely busy lives in the theatre and Festival world.

Because we used every Early Intervention strategy possible and had access to supportive Kindy and Primary School and exceptional role modelling from 4 years- older sister Lotte ( and another sister Beatrix 5 years later),Isi developed into a delightful person,confident for the all girls High School which suits her needs but requires driving every day.

Her mother has survived aggressive breast cancer 2 years ago and is in a demanding childrens's creativity job. I'm 80 now (living independently and very fit and helping almost every day). Isadora's loving father often has late hours and some o/s travel due to his work.

So NDIS comes as a boon to help with school pick-ups and sharing outings with other Down syndrome friends,as well as training Isi to use public transport and support her social awareness and love of swimming.

The strain on our busy family would be almost unbearable without NDIS.It has meant we could allow Isi to participate in the Adelaide Festival 2017 Restless Dance INTIMATE SPACE ( sold out) by attending so many rehearsals and performances. With NDIS help she is learning skills to equip her for independent living and employment in the future .

Lisa Jackson

I am 53 yrs old in 2011 I became physically disabled after severe Miller Fisher Variant Guillain Barre syndrome .I spent 2yrs in hospital at Robina QLD before having NO OPTION other than discharge to a NURSING HOME where I still reside today. Life goes on I have made great strides in my everyday independence. Living in a nursing home surrounded by elderly people with dementia Alzheimer’s and watching people slowly deteriorate and died around me is a mentally cruel way to live. Last August after 3 operations in 2016 I finally got rid of my tracheostomy-I am ready to move forward now to doing some hydrotherapy-Iam using the last of my Superannuation to fund this-As both myself and the Physiotherapist believe after 4 yrs with no rehab I can still regain my strength to stand up and eventually walk-I am currently using an electric wheelchair. My fingers are clawed due to nerve damage despite this I have found aids and devised ways to write legibly, independently feed myself, prepare sandwiches, open and heat microwave meals, clean my teeth, operate my computer and mobile phone and travel independently using wheelchair taxis the train and the g link tram. I aspire to making my present dreams a reality I want to cook my own meals do my own washing live my own life as independently as possible. My other goal this year is to work part time again using a computer .I am a people orientated person who enjoys helping others. I have done everything within my power to move forward onwards and upwards in my life-a nursing home setting has restricted my ability to move forward greatly-I ring disability services every 6 months but I remain waiting-I need a helping hand up to rejoin contribute and become a valuable member of my community again. THIS IS WHAT THE NDIS CAN DO FOR ME PERSONALLY AND THOUSANDS OF OTHER DESERVING AUSTRALIANS

Tegan Pinkard

I believe the NDIS can provide freedom and choice for people living with a disability. I have had MS for 10years, my disability is currently mild however has the potential to change someday in the near future. I am the mother to 2 children and I am doing my best to remain fit and healthy in order to care for them as best as possible. At times I fear the unknown of this disease and what impact it will have on both my life and my families. I hope that the NDIS will provide me with options and be able to self-manage my healthcare.

A.S

Our daughter suffered 2 surgeries to remove a brain tumour last November. Our lives have been turned upside down. Thank the Lord she is making a wonderful recovery. However, the amount of paperwork, consultation with dozens of medicos, attempting to negotiate Government agency requirements, has been distressing and exhausting. We can only hope that NDIS streamlines and facilitates the processes required, when faced with such an unexpected health situation.

Val Date

My 54 yearold daughter Michelle is a victim of the 1966 road toll; her head and leg were hit by a car when she was crossing a suburban street, 3 weeks before her 4th birthday. This formerly intelligent little girl has been intellectually and physically disabled every since. At 81 I have fears for her future care and continued access to family members and wish to ensure that all her needs will be adequately provided for during the remainder of her life. On paper NDIS offers this, nevertheless I wish to ensure all her entitled comforts and care are securely provided for during the remainder of her (and my) lifetime. How can I be assured this will happen please?

Linda Sayers

Although the NDIS isn't yet rolled out in my area, it is coming soon. After being registered with DSS for almost 4yrs & waiting on their register of need as long, I am hoping that finally my son & I will have choices for his support & needs. We may actually receive some support. For my family hopefully this will be a positive change.

Laura Bloom

My wonderful son was diagnosed with severe autism at 10 months old. He is now about to be twelve years old. In that time we have received almost no additional support outside of school, and while we are still a loving and committed family, without the prospect of the NDIS bringing financial, physical and emotional relief I don't know how we would still be hanging on. We cannot socialise without a carer which we cannot afford. Therapy, and after school care is all paid by us, which means that although we earn a good wage and pay significant tax, we are crumbling financially, physically and emotionally. We are isolated and exhausted and the worst of it is our son has so much to offer! Although he needs support to do so he loves to engage and participate. It's just so hard coming up against our own physical limits to support him to do that. With support he will adore scouts, footie and family barbecues and other social events. Without, we are so exhausted from the non stop two man marathon my husband and I are engaged in that we are doing well just to all be here, still solvent (barely) and in one piece. Without wishing to exaggerate we have been a family in crisis for a long time, and yet everyone would tell you what a wonderful family we are. Disability services have been useless to indifferent. With the ndis we hope to return to the flourishing productive family we were and know we can be once again, if our son can participate and grow the way he's capable of and meant to. Thank you, Laura Bloom

Nathan Dore

I have been doing yoga help more my body better having cerebral palsy it makes my body harder to move if I not move it on a day move why the Ndis see it as a high need I do not know but health and fitness are a nervous thing to me

John Dean

This is the real story of severe Autism written from the heart of a mother. This link says it all and why NDIS is critical.

http://www.autismawareness.com.au/news-events/the-autism-post/yours-severely/

Peter Macpherson

At the age of 52 I was struck down with a Neurological disability that is progressively becoming more disabling. I now need to use a walking stick at all times and a scooter for any distance of more than 50 meters. I worked for more than 30 years and raised two children who are now in the workforce. As my disability will continue to worsen as I get older and I do not have have the finances to ensure that I at least retain my dignity, my quality of life is dependent on the NDIS happening.

Lorraine Tydeman

My son is the participant, I am ageing, in the over 60 group and with NDIS coming, my sons provider uses vans and picks up participants and takes them to the activities they attend free of charge. They have informed us that this service is going to stop unless they can come up with a viable alternative. I and a few others who are older that me, some in their eighties are going to have to transport our children to their activities as I live in rural NSW and his service provider is 20 ks away. some people live 40 to 60 ks away and some taxis refuse to drive that far in the evenings, because of wildlife on the road, esp kangaroos as if they hit one they lose their means of income. The mid north coast is a very popular area and people moved here when their child with a disability to have a good life and now this is whats happening

Gillian Devine

My son is Brain injured from a car accident in 1988. Since that time my husband and i looked after my son but 5yrs ago my husband passed so now its only me and I am 70 this year. The ndis will help a lot of disabled people and put families mind at ease unless you have been the same position you could never understand the worry and stress people go through.

Mark Purcell

My name is Mark Purcell. I am the father of Elise Purcell who has severe autism, moderate to severe intellectual disability and epilepsy. I am 62 and Elise is 28. We have lived together alone now for 12 years. I have never wanted her to live in a group home. The stress caused by her behaviours while growing up contributed to the breakdown of my marriage with her mother and to psychological problems her younger sister has. I was able to work part time up to a year ago but then due to needing to be "on call" constantly I left work late last year.

We live in the Shoalhaven area so not in the NDIS as yet.

However the NDIS has given me the hope I never had before that Elise can live as independently as possible in her own home should I cease to be able to care for her. From 2014 -2017 Elise moved out of day programmes to self-managed community participation funded through the NSW Disability Department. At the start of 2017 this was changed to the Living Life My Way programmed. Initially the NGO we were with essentially evicted Elise from day programmes due to "behaviours". They did us both the best favour ever as Elise has flourished in the self-managed model. Over the years we have increased our genuine self-management of Elise's day to day life [in resistance to disability NGOs who seem to find sharing management with parents difficult] and she has continued to flourish and her "behaviours" continued to diminish. This has increased my optimism about life under the NDIS.

Though I think it is a total mistake to dismantle totally the NSW Disability Department, the self-managed and living life my way seem to be a glimpse into how positive life for Elise can be under the NDIS.

I remember reading that the role of a career is made "a burden" in the absence of a sense of hope ... that the future is one of increasing bleakness. The NDIS has given me more hope than I have ever had in terms of Elise's future.

Penelope McNally

I am a widow with secondary progressive MS. I have no children, and what remains of my family live in another state. The NDIS has taken a huge weight of my shoulders about my future care.

Robert Altamore

The NDIS has changed my life because it has given me the ability to set my own goals, exercise my choices and given me control of my money to spend on the adaptive technology and the training I need to change my life and participate in the general community. I can now get my adaptive equipment repaired and maintained. access braille with my own braille embosser and access digital information because I am being trained to use a mobile phone. This makes me independent and able to access information which sighted people access and has enhanced my life.

Del Childs

The NDIS has not yet rolled out in my area but from what I am hearing there are many positive stories of people who are getting funding approved for a range of needs that they haven't been able to access previously.

Having said that, I am sorry to say that for me personally the NDIS will mean nothing. Why? Because I am over 65 and at best only the Continuity of Support program will apply to me.

It seems such a discriminatory decision to make an age related cut off line. At this point in time neither the CoS nor the Aged Care system will provide anywhere near the same amount of support that the NDIS offers.

Just because we are over 65 doesn't mean that our disability disappears and our needs become age related. I sincerely hope that Every Australian Counts will do what it can to change this situation, so that in fact every Australian DOES really count!!

Peter Day

NDIS is unaffordable for our daughter, Janine, who is 41 years old but functions as a 10 week old baby at which age she suffered her first catastrophic seizure. From 2006 Janine attended day care at Kankama in Mornington. For 8 years her annual fee including transport in facility buses never exceeded $800.Kankama merged with Connecting Skills Australia in 2014 Taxi replaced buses. Fees immediately were monthly $ 270.In 2016 CSA introduced fees for the individual activities offered at day care These initially were $30 per week but protest bought them down to $20 per week. When further challenged CSA claimed justification because of a $10000 loss on activities ,concern that NDIS was slow to pay providers for services therefore there was a need to build up considerable cash reserves to stave off cash flow problems and bankruptcy as had occurred in similar circumstances in the U.K.. I refuted these claims: $20 per week for 50 clients was a lot more than $10000, Every Australian Counts refuted the slow payment claims and the UK failures were due to austerity measures arising from the GFC CSA are unmoved an recently announced transport fee increase due to $170,000 loss providing client transport. The claim is that the NDIS does not provide transport assistance and therefore user pays. Consequently Janine's monthly transport fee has jumped from $170 to $359.33 and this represents only 50 per cent of the increase which will be charged from July. Presumably her transport fee will then be approximately $540 per month plus $6 per day attendance fee plus daily activity fees. In total about $8500 per annum. Unaffordable.

Susanna Goodrich

My son Toby is sixteen. He has Down Syndrome. He's had a rough few years with an autoimmune condition.

Until the NDIS funding, Toby was isolated, withdrawn and I wondered if he was depressed. He was a young man needing lots of contact with his peers and the wider world, yet he was confined to activities and socialising that his mum and dad could fit into their busy lives of full-time work and caring for 4 children. Toby’s social behaviours were becoming more unpredictable and his self-esteem and mood seemed to be plummeting. He had few experiences of his independence as a 16 year old young man and he was not learning essential living skills like travel on public transport, how to socialise with peers with and without intellectual disabilities and how to be an employee, like many of his peers.

The NDIS has provided funding that has changed Toby’s life. His week has opened up from a routine of school, family life and the occasional social event, to a week that looks much like his other teenage brothers: he plays sport, goes out with peers, works in a part time job and will soon be learning how to catch the bus to the local shopping and entertainment hub. He walks taller, smiles more and behaves more like a young man ought to behave. He just needed the opportunities and support that the NDIS has provided him with. His life has become more healthy, independent, and enriched. It reflects back the amazing success and productivity of this ground breaking social policy. Thank you so much.

Erin O'Donnell

To the Productivity Commission,

I remember when the NDIS was announced as government policy, and I felt an overwhelming sense of relief. People with disabilities (and those who care for them) already face massive hurdles in living productive, happy lives, and the NDIS is a much-needed funding and support program that makes it just that little bit easier.

I am living with a chronic health condition that makes it impossible for me to work full-time, and I am extremely aware of how dependent I am on the support of my family and my husband. We should guarantee all Australians the ability to live safely, with the capacity to access the funds and therapies they need to be productive members of society. The NDIS makes this dream a reality.

I am also watching my best friend navigate the difficult process of finding support for her baby daughter, who has just received a diagnosis of cerebral palsy. She will be dependent in some way on the NDIS for the rest of her life, and it is heartbreaking to discover that the process of making the NDIS available to everyone has created a real gap in funding support. For children, this means that they cannot yet access the funds they need when they need it the most (which is as early as possible, to make sure they build strong and healthy bodies, and limit their need for future treatment). The slow and geographically limited roll out, and the problems it creates, also shows how crucial the NDIS will be when fully operational.

The NDIS, when fully available to everyone, will be a huge success story for people living with disabilities, and caring for people with disabilities, throughout Australia. For the first time, we have made it clear that these people are not alone with the hand they have been dealt by fate.

The NDIS is our collective commitment to support people like me, and my best friend and her daughter.

Thank you for considering my submission.

Janis Clague

(My name is Janis Clague, Taylor's grandmother. I'm writing this on his behalf.) Taylor is blind, autistic & epileptic.

With the funding Taylor received last year, 2016, he spent two days a week at Breakthrough learning independent living skills, people interaction, physical development, social skills......He has progressed very well & is continuing this training this year.

He studies music at Sound Sculptors Studio twice a week, learning to play the drums, piano, & use his voice. He has been learning drums for several years & is very adept. Piano he started last year to settle his brain activity, develop his fine motor skills, & help his focus. This has been a struggle but he has learnt how to use the keyboard, where all the notes are, & can play several songs. He's learning how to develop his voice - enunciate, articulate..........He is part of the Sound Circle Can Do Programme through Disability Matters one day a week..........It's important that Taylor stays busy & is learning & testing his ability, & this last year has helped him develop enormously, whereas school was a bit of a waste - although he was in the Special Education section, there was no special curriculum for someone with his disabilities.

Jessica Millen

I'm not sure if I'm even allowed to write this because as it stands we are about to submit our third round of forms to try get some funding for my son. He has severe verbal despraxia, fine motor skill issues as well as some behaviour issues and severe learning difficulties. He really needs needs the extra help which this funding would do if he did get it but they keep telling me he doesn't have a disability and this won't be an ongoing issue, like they can tell! Of course it's going to be on going because he needs extra support which he isn't getting yet I'm reading stories from people who have said their kid is getting social funding so they can attend concerts and go out for tea etc? How is this using funds wisely? What about the people like my son who really need it? I'm so disappointed with this whole situation and set up more needs to be done to screen the people who are already getting funds

Karen Wakely

We began implementing our plan in Jan 2016. In a little over 12 months, the change it has facilitated has been extraordinary.

For the first time we have been able to access meaningful therapeutic supports. Previously therapy was only once a month, and was inadequate for gaining any momentum. Now we access either psyc or occ therapy every week, and it has been far more effective in developing the social and practical skills needed for independent living. For the first time, my child is beginning to successfully participate in mainstream community activities.

Watching the way in which the psyc works with and responds to my child has also been of immense value to me as a parent. He has modelled strategies that have helped me to adopt more effective responses to difficult situations.

We have been somewhat isolated as a family, with all other family living overseas or interstate. Outside of school, there were few other adults in my child's life, but I can now hold over difficult issues to discuss with my child at therapy in a supported environment, and we are actually making headway on issues that we have been struggling with for years. Therapists help me to reinforce expectations of respectful behaviour, and this provides support to me as a mother that I have not had before.

There is room for improvement in the way plans are structured. We have 3 goals, which tend to duplicate each other. Only 2 of them identify strategies to achieve them, and there are no KPI's. We have had our difficulties with the planning process, and it is still not all that clear to me what the objectives of the NDIS are, and what it will/won't fund, but overall our experience has been very positive.

I am beginning to see a more positive future that includes a greater prospect for independent living, and may also include employment.

Yuri Gregorian

I don't got too much to say you. It’s just the NDIS is a little hard to get my head around. I have no idea if I’m eligible or not and have no idea how to get through all the paper work and other stuff to join it. It would be much better if it worked just like the disabled job finding people where I have a disability pension so I can just show up, sign a few papers and get on with it............I think it might save money that way, it’s not like Centrelink don't put you through the ringer is it so I don't see the need to do it twice. Sure, people that don’t got pensions need to get checked out I guess. The least you could do is have people whose job it is to help people do all the paper work and stuff??

S Lawson

The NDIS means nothing to our family yet - it is yet to commence in our region. It does however promise three things:

1. The NDIS promises to be an umbrella, a gateway, for the multitude of services, equipment, and personal support hours we currently access through countless other mechanisms and providers.

2. The NDIS promises to place that umbrella in our own hands.

3. The NDIS promises to recognise our changing needs over time, whether that be due to the degenerative nature of disability, or the changes in our family as we grow/age.

We look forward to its arrival in our region, so we may continue to participate in the community, in the workplace (as taxpayers), and as parents, in an equitable manner.

Brian Stanton

Hello,

My son is a 27 year old with multiple, complex disabilities that leave him with a range of behavioural disorders resulting in confusion, anger, aggression, violence, property damage, self-harm and injury to other persons.

As such he is "deemed" not suitable for group homes, where the potential dangers to other "customers" would be too great.

My son absolutely has to have "one-on-one" supervision and management at all times simply to control his rages and meltdowns that occur on a regular basis.

My son is still at home with his family. This has proved very debilitating to all concerned, as we are often faced with a "war zone."

I am my son's Primary Carer - I am 68 years old this year, with heart/health problems.

We have been "trying" to have my son placed into permanent care with providers in Brisbane for over 12 months.

Attempts have failed thus far.

THE PROBLEM is, for my son to have adequate, safe and effective care in his "own home" he has to be the single occupant with a Carer to look after him, and this will cost in excess of $320,000 PER YEAR.

Disability Services Qld are not prepared to provide this funding.

So I am forced to keep my son at home until funding for 1-on-1 is available, as a group home would certainly result in injuries, if not fatalities.

Caring for my son in the home environment is extremely taxing , dangerous and simply not acceptable.

Will the NDIS be able to fully fund the requirements for my son and those like him?

My son requires in excess of $320,000 p/a just for support workers.

He also requires adequate funding for therapies and a host of other needs simply to keep him going.

How will the NDIS cope with this huge, critically needed, funding demand - especially when it is spread out over all of the needs base?

Life can be "hell" at times and full of terror caring for my son at home - but how can I subject other "clients" to this "clear and present danger."

Bruce Wilson

hello,

just briefly.

i have been a high level quadriplegic for the last 34 years and i currently receive only a fraction of what i need in terms of care, in order for me to have some quality in my life.

i currently rely on people giving up a lot of their time so i can just manage. i have a lot of pain which dictates to me what i can and can't do most of the time. pain doesn't seem to get mentioned very often.

i believe the NDIS can change my life considerably so that i am not dependent on 'charity' and i can rule my life again. i want my life back as much as possible doing what i want, when i want. it's all about funding. give me enough and i'll be happy. simple as that.

over to you NDIS.

Bruce.

John Neve

An ndis is a barometer of a truly compassionate western society that cares for all the members of its community without regard for their circumstance

Carly  Foat

The NDIS has not yet been rolled out in our area of Gippsland and isn't due to be until 2019. I am feeling very anxious about this. My son is 3 and he Angelmans Syndrome- he requires full time care and around the clock. He doesn't walk or talk and sonhis needs and wants rest heavily on our shoulders. Feeding, toileting, sleeping and getting around as well as suffering Epilepsy are all difficulties of each day!! I want the NDIS to help take the financially AP burden off these things because it is sometimes stressful enough just caring and worrying about him day to day.

Narelle Polley

We have 26 year old Down Syndrome sons that live at home with parents on our dairy farm. They have been on NDIS since last September and we are definitely not better off. We live 30km away from services and their Maccas work which they love just as they do the farm. Their social outing had to be cut back due to transport costs and I have had to do more transporting. They both need social times with being isolated on farm. My health has not been the best and have two operations coming up, their father works seven days a week running two dairy farms so he is tied up and has not the time to help with transport & support. We are also having trouble with service providers to have the time and staff to do the extra workload involved in admin with NDIS. NDIS support in our area are very un informed with everything and very little support when you go to them. Good staff though they are not getting correct and precis