Chrissoula Vitale with her children Lexie, Chris and John. Source: news.com.au
The plan has been hijacked by political squabbling and funding disputes and is only 5 per cent operational, meaning thousands of families are being forced to wait as it proceeds on a piecemeal fashion for just a handful of participants around the nation.
The NDIS would operate in a similar way to any other insurance scheme, creating a pool of money which could be drawn on by families on the basis of their children’s needs.
You can read more about it at www.everyaustraliancounts.com.au and sign on as a supporter of the campaign.
The people who are best placed to make the case for its immediate introduction are the families and carers themselves, hundreds of whom have contacted us in response to our recent coverage.
With their consent we publish their stories today and invite other families to get involved. We will be presenting this story board to every State Government and the Commonwealth asking that the issue be put back on the table as the number-one item of importance at the next COAG meeting.
These are just some of their stories.
Jill Bowles, WA: Our daughter Hannah is 12 and intellectually disabled with a chromosomal abnormality. I often worry what would happen if Hannah became lost.
Jill Bowles with daughters Hannah (left) and Jessica, husband David and son Luke. Source: news.com.au
Should we have our mobile number tattooed on her somewhere? She won’t wear the medic alert bracelet we bought. And the heartache I feel about when my husband and I aren’t here any more.
Who will love her the way we do? Then the blame scenarios…when Hannah ran on to my 10 year old son’s footy match on Friday night I was thinking why isn’t her dad watching her? Thankfully we are not in the 70 per cent divorce stats.
Oh the guilt. I think I spent far too much time feeling sorry for myself over the career that I am not living. The siblings. Poor things. Older sister, younger brother. Their compromises. The therapy. A lifetime of it.
Karen Taylor, NSW: I am a mother of four children and my six-year-old has autism.
Karen Taylor and family
Karen Taylor with Barry, Chad, Annie, Sam, Karen and Holly. Source: news.com.au
Everyday I wonder what I can do to make things better for her, what I can do to improve her quality of life, every argument with my husband results from the tremendous stress of everyday life, what will happen to her when we are gone, what her future will be.
She is the last thing I think about every night and the first every morning. Life has just got even harder at school for her as the little funding she had for support has been taken away by government funding this term.
Kate, Victoria: Our beautiful boy has autism, but it doesn’t define who he is: his heart does. In addition to the NDIS, we desperately need state governments to invest more into integration aides.
Our boy was rejected based on a score which on the day, meant he could answer a couple of questions correctly. This is despite being ranked on the 99th percentile of students across Victoria, meaning only 1 per cent are “worse” than him re: ability/disability.
Without an aide, life is so much more difficult for him, his teacher and class mates and the flow-on effect hits our family hard, with two-hour meltdowns after school, regression, high anxiety and sometimes violence.
We have two other children and it can be full-on to juggle everything during these hard times, which have become more frequent.
Chrissoula Vitale, NSW (photo above):
We have three children – the two youngest have autism, to a significant degree. Our oldest is 19 and in his first year at uni. He will ultimately have the responsibility for the ongoing care of his autistic brother and sister.
He may never reach great heights in his chosen career because of the inevitable responsibilities and restrictions that will come with being a carer. Autism cruelly restricts the potential of the entire family, not just the family member with the disorder.
Susan Fernance, NSW:
Susan Fernance and family
Susan Fernance with husband Carl and sons Michael, Scott and Richard. Source: news.com.au
I know first hand as my husband and myself (and our family) have experienced over the past 48 challenging years at having to look after our severely physically disabled son Richard, who was brain injured at birth resulting in him having Cerebral Palsy.
He has very limited hand control and has never been able to walk so he is very limited in what he can do without help and support. In saying that, Richard has never complained and always kept his sense of humour.
We would love to see other parents in a similar situation that we have experienced have a much less stressful life in the future if the NDIS is introduced. I would like to be able to say to a politician: “Try living for just one day in a wheelchair, not having any use of your hands and then imagine how you would cope in society every day of your life”.
I think they would then realize their life would be a desperate struggle without help… Of course this is only one of many different situations parents contend with every day as you already know so we need to keep pursuing this important issue and never give up.
Rex, Melbourne: As a young boy with Cerebral Palsy in the 30s, I saw how my mother had to struggle to raise me. In those days there was little by way of support for kids like me, and as I was refused entry to primary school, Mum had to teach me the best she could.
Later I got employed delivering newspapers and then washing glassware in a path lab until I woke up to myself and undertook several degrees of educational catch-up. Later, I was able to see just how much people with a disability or two could go when given a leg-up into the community. The NDIS will be another important step.
Wendy and David, SA: On more than one occasion despite our constant high vigilance our son has gotten away from us. I have called out to people as I frantically ran after him to please grab him and watched them just turn away.
We have searched frantically with all the horror stories of autistic children going missing with poor outcomes playing over in your head. We have had to call the police for help. I’ve also been abused many, many times by the ignorant when my child doesn’t behave as would be expected (he is now 10 years old). I’ve struggled with the shopping, juggling the needs of our other two children, work etc.
Our house is no longer a home but a prison every door and window are locked, every cupboard too, even the fridge, but still we find our boy eating things that weren’t meant to be eaten, and him getting out of the house.
We love all our children dearly. We just need a little help. Our boy is now as tall and strong as me. We don’t know what the future holds but it is not getting any easier.
Robyn, carer, NSW: I work for a small disability service in a low socio-economic area. There are 40 clients, who access different programs. They are brought to the service on small commuter buses each day. Some of our clients have very elderly parents, with grave concerns for their children’s well being when they die.
The parents have endured years of difficulties and hardships, raising a child with an intellectual disability. They are weary.
Henry, Victoria: My daughter – now 23 – has Aspergers syndrome.
Henry Pinskier with daughters Rebecca and Marcia. Source: news.com.au
Today she is doing really well in many areas of life but the burden on the child and the family is profound, was profound and remains substantial.
As someone who understood the system from a health service delivery point of view, who understood the system at the political point of view, it was clear that to get outcomes for families without means was impossible, let alone for us who are of means and who could negotiate/wind our way through the political process.
At the Federal level the child was able to access federal funds but her greatest need was educational assistance at the State level – unattainable in reality.
At the end of the day the 20 per cent of all people have a connection directly or indirectly with people with some form of disability and this is a society that is wealth beyond its dreams which can easily afford an NDIS despite the cost. It takes will power to drive these things through.
Helen, Victoria: My husband and I are parents of a disabled 26 year old (deaf, visually impaired and with mild Aspergers Syndrome). Now in our 60s we are becoming increasingly worried about our son’s future when we are no longer here.
We have an older son living interstate and although he cares about his brother greatly, we do not want him to care FOR his brother, which is the sentiment of most parents in our situation. We can afford to give our son his own home, but bricks and mortar will not ensure his well being in a the future on his own.
After about eight years of training and trying, our son has a full time job and also a driver’s licence and though our circumstances are different. I have seen and heard of so many parents whose daily life is a battle. It is only those who have been there, or even half-way there, who truly understand what life is like living with children with severe disabilities.
Lynda, WA: “My son Taylor has a lot of problems that we deal with day to day. Some days are good but some are just plain awful and you ask the question why us? But why not us, no one is immune to having a disabled child and the government needs to acknowledge this. It is not our fault and families should not be penalised.
The main problem as I see it is the “lottery” for funding. It seems if you can write a pretty grant application you are more liable to get funding. One mother I know says she is no longer going to go through the funding process because it takes up too much of her valuable time with her child. I know that I could spend a great portion of my time on funding applications only to be knocked back.
I would like to meet the faceless people who have to power over my life and let them look after Taylor for a day. Families like ours are often too busy just surviving to have time to jump through the hoops of government funding, and so many slip through the system. I know of families who have gone for years without any financial or practical support because they are unable to or cannot access services.
There needs to be a scheme that everyone is entitled to the same amount of financial, practical and emotional support and not just for the ones that have the ability to access. In some ways we are almost lucky because Taylor is so disabled and requires so much work as we do get quite good support and have had the same therapists etc all his life.
My husband has quite a well-paying job, but having put one child through university and having Taylor, we had struggled at times when there have been unexpected expenses.
If for example Taylor gets sick and most times this means a flight to Perth, we have the expense of finding accommodation and just living away from home. I could go on and on and I’m sure many families have expressed to you the difficulties of having a disabled child. While Taylor has many problems he has enhanced our lives tenfold and he only has to give a little laugh or smile and say I’m Taylor and the world seems a brighter place.
Julia, retired carer, Qld: As a now 84-year-old with considerable life experience and community involvement as a long time volunteer with support groups in general I want to add a little to the subject.
One point which no-one seems to click on is that paid services and their paid support workers are there doing their best but then they go home to their own life, and the families of the disabled get the bad hours – the night times, the early mornings, the tantrums, the constant stress of “what will happen if”, the love-hate relationship that is hidden from view but produces a feeling of guilt.
And so it goes on and on. Other siblings suffer from less attention and also can be taunted by school associates. I know a mother who used to lock herself in her bedroom for safety from her adult son who constantly threatened her.
Not enough support hours and funds to go around. If funds are reduced the paid people don’t take less in wages, the working hours are cut and the patients bear the brunt of this.
Helen, Victoria: I am the mother of three autistic boys aged seven and under. The only point in your coverage that didn’t strike a chord with me was talking about the kids while in bed at night, my husband and I are so exhausted that by the time our heads hit the pillow all we want to do is grab a few precious hours of sleep (invariably interrupted by wandering, wakeful children) until we have to get up and do it all again.
We must keep prodding those pollies consciences, if there is such a thing, and putting a human face to this very important issue. Most of us spend our days constantly fighting and advocating for our kids, and by the time we’ve dealt with the Education Department (there’s an entire story just there), Centrelink, and pretty much most other government department we have very little left.
Patrick, Qld: As the parent and principal carer of a 15-year-old boy with autism and intellectual impairment, I can agree with, sympathize with and, most of all, empathize with this issue.
Small (and narrow) minded politicians, especially Mr. “Can’t Do” Newman, love to “talk the talk” by saying how much they “understand” the predicament of the disabled and their carers. I have yet to hear of, let alone actually see these people come out of their ivory towers and experience the lives we have to lead 24/7, 365 days a year.
Until they do, their condescending pats on the head for the good job we are doing as carers will continue to be taken with a grain of salt.
I issue an open invitation to any and all of these politicians to come and walk in my shoes for a day or two so that they can see first hand the emotional and psychological stresses faced in trying to reason with and/or rationalize with a 15-year-old “toddler” who is incapable of reasoning or acting rationally. My wife and I are still waiting for a response from the Queensland Minister for Disabilities to a letter written two months ago.
John, Victoria: Our eldest son is a very, very mild Asperger – unless one really knows what they’re looking for, they would never know – however, our youngest is profoundly Asperger and bordering High-Functioning Autistic.
Our lad has improved in the past five years going from basically illiterate at 13 to working towards a modified Year 12, which is a triumph. Frankly, I couldn’t care less if he fails miserably (he won’t); our pride is in the fact that he tried.
My wife, myself and my boy’s siblings will work to make sure his life proceeds with as little disruption as possible. But our biggest fear will never be allayed – what happens when we are no more? We know his brothers and sister love him and will defend him and protect him with absolute ferocity; but they’re not us and they will have their concerns which may leave him floundering until they are able to help.
We know he will be cared for, but will it be enough? These are the fears and worries that accompany us in our quiet moments and they never go away.
Faye, NSW: We are parents of an intellectually and physically disabled 20-year-old son. We have been on a emotional and financial rollercoaster for these 20 years.
The bad news is the rollercoaster does NOT improve as our children get older and we, their full time carers, start to age. We found when our son turned 18 years old that he was now referred to as an adult, even though the intellect was still of a two-year-old. Funding for his occasional recreation/respite for us was cut.
Our children with special needs have the right to mix in the community, supervised by a carer, independently from their family, as other young people do. Up until our son turned 18 he attended a Special Developmental School.
We then needed to do research on a day placement for him to attend, as he was unable to attend a work shop. That was so depressing, to our horror the clients at most services were 18 to 65-year-olds.
We found that we as parents in our 50s were actually younger than the clients our 18-year-old would have to associate with. We also felt as if we were in an environment like a nursing home, that we would have been looking for our elderly parents.
Our daily concern is what will happen to our loved ones when we can no longer look after them or we die. The sad truth is that most of us parents, feel at this stage in our lives we will have to take our children with us when we die, at least we know then they will be safe