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Jul 30, 2012
James O'Brien

An open letter to our politicians, from a mum

Below is a piece from campaigner Heike Fabig published today in the Sydney Morning Herald. Heike is the mother of three children, two of whom have a disability, and is president of the Association for Children with Disability NSW.

I will not soon forget this Week of Tears. I doubt anyone not personally touched by disability can understand the level of despair many families descended into when the politicking began over the National Disability Insurance Scheme.

Thankfully, this was followed by tears of relief when the federal and (most) state governments reached a compromise at the end of the Council of Australian Governments meeting.

I have met many of you, including the NSW Premier, Barry O’Farrell, the Disability Minister, Andrew Constance, the Prime Minister, Julia Gillard, and the Minister for Disability Reform, Jenny Macklin. You all have at times sat around the table, had breakfast, talked about the price of wheelchairs and shared jokes with me and my children, especially my young daughter Billie.

What you have told me, and how you have said it, makes me absolutely certain of your personal commitment to the NDIS.

And yet I have been disappointed in all of you this past week.

Like her older brother, Billie has cerebral palsy. She is a very outspoken and determined six-year-old girl – in fact I had better warn you all that she’s expressed an interest in the nation’s top job!

She cannot sit unassisted. She cannot walk unassisted. She cannot dress herself, tie her shoelaces or brush her teeth unassisted. But after a wonderful year at an amazing special school she has now settled in well at her brothers’ mainstream school. She is popular in her class, is learning to read and write like her peers and has taken up chess and piano and is preparing for a role as a witch in an abridged version of Shakespeare’s A Midsummer Night’s Dream.

None of this would have been possible without the hours of therapy and the array of equipment we have organised for her. Services from our disability service provider are patchy – short bursts interspersed with months spent on waiting lists – so we supplement them with private therapy (average $75 a pop). We bought her an electric wheelchair when she was two ($17,000) and a power chair more recently, which allows her to stand up at the push of a button ($27,000). She received a bright pink manual wheelchair ($7000) for her sixth birthday. She has two types of walking frame ($550 and $3000) and a shower chair ($1500). Apart from one walking frame donated by the Lions Club, we paid for all this equipment via our ”disability debt”, also known as our mortgage, because either the state government would not fund the equipment (too young, too expensive, not strictly necessary) or funding would take unreasonably long.

And yet I do not mind one bit. As with many people with disability or their parents out there, I can do the maths over a person’s lifetime. A correctly fitted wheelchair can be expensive, but compared with the personal and public costs of multiple surgeries in later years to correct dislocated hips or spinal scoliosis, investing in a chair really is a bargain.

And that is exactly why an NDIS is so hugely important. With its needs-based approach, it changes the whole disability paradigm from charity to an approach centred on the person. People would choose services they need and want. The psychological benefits of this cannot be underestimated.

I know from my meetings with all of you that you ”get it”. Yet come the negotiations to implement the scheme, you all reverted to long-established habits of Labor/Liberal and state/federal argy-bargy and the tired old game of passing the buck.

You have arguments over dinner. You refuse to take phone calls. You refuse to meet for discussions. You play a game of offers and counter-offers while I strain a muscle in my right shoulder taking Billie to the toilet and wonder what is needed for you to leave behind the partisan politics.

What I saw last week filled me with dread – this was only a tiny first step on the road to a fully fledged scheme.

I beg you to look Billie in the eye and show her the selfless leadership needed to navigate the negotiations ahead.

7 Comments

  • How well said…from someone who has sat beside the people who are able to implement ground breaking change, and who like our family have been campaigning for years…

  • To live with a child with a disability is a labour of love. It changes lives, it breaks up families it puts everyone caring for the child under tremendous stress. It is often a life commitment for the parent carer. Often these children are in the position due to no fault of their own. A moment in time that has labelled them for life.
    To battle each and everyday, to know that it could last for years puts families in a desperate situation.
    These families need to know that there is assistance out there. The NDIS would enable them to access the help that they need.
    Unemployed have generous Centre Link payments, students have access to Austudy why is there not enough money to fund a NDIS.
    This a disgrace for Queensland that they cannot look after those who really need help!

  • What a BIG letdown for our Queensland disability people and their families. My son is now 48 and his health problems and needs are increasing. Deafness being one of his disabilities is almost always put in “the too hard basket”. Disability Qld has assessed him 4 times and he has been given a Priority 1 on each occassion BUT then came the usual words from them “but there is NO funding available”. We are left to cope the best way we can. As he no longer wants my help and I am suddenly regarded as his enemy….. where does that leave him??? I also have a non-malignant brain tumour which is affecting me a little but I’m doing ok. Governments always find money for arts, horse racing etc. so it’s about time they got their priorities in order and helped the most vulnerable in society who cannot help themselves. Come on Campbell, step up and be counted!!!!!

  • How very well said…. and mirrors MY 41 years of “lived experience” of Cerebral Palsy and that of my family. Even worse I live in Queensland where the the NDIS is not yet Real. I refuse to allow my beautiful wife and two daughters suggle in their lives because of my disability. I love my family more than words will ever express.

    If you live long enough you will aquire disability!!! I hope I will be around to see how well you cope with life then.

    To the politicians I say two things, Disability costs money and the amount is growing each day. What is the costs of not doing something like an NDIS? and if so, what is any governments alternative position for disability support? The silence sure is deafening in Queensland – Mr Newman & Minister Davis.

  • I have just been to the launch of stage 1 of the NDIS in Tasmania. The commitment by Treasurer Swan & Premier Lara Giddings was reassuring, to a great extent, that this is actually going to become a reality. Please, no more party politics ( Mr. Newman & Mr. Barnett ). The expectation of reduced bureaucracy, increased services & a national recognition, has brought a glimmer of a smile to many people’s faces after a long time frowning under the pressure of constant uncertainty. My apprehension is still evident, there’s still a lot of hard to be done but every time I look into my children’s innocent & vulnerable eyes, I know it’s worth every drop of sweat, every hour of dedication to get this right, enshrined in law for a better, more certain future for everyone who struggles with a disability day in, day out. A heart felt “thank you” to everyone who have championed this cause, let’s keep the momentum going.

  • I do not have a loved one with a disability, but have known people who do and I know how hard it can be on the whole family. I praise you all for your strength, devotion and tireless efforts with your loved ones. I support the NDIS scheme and pray for a positive outcome for all of you wonderful people. God Bless!!!

  • The introduction of the N.D.I.S. SHOULD NOT be a political one,it is a God given right that EVERYBODY be accepted for who and what they are,be respected for their human dignity and allowed to reach their full potential in life whatever that might be.Not to be dictated to by bureaucratic red tape in a system that is BROKEN and has been for years.
    Thirty odd years ago in the time of the Whitlam Govt.there was talk of something similar to the N.D.I.S. being introduced but then it got shelved.The same old story,not enough money to fund,and everybody passes the buck.I ask myself just when will the time come when there is enough money,and People with a disABILITY are no longer treated like SECOND CLASS CITIZENS.Maybe when there are enough politicians who have somebody in their family with a disABILITY or they become disABLED themselves.Would it take something as drastic as this scenario for the realisation of the heartache and lack of support to hit home to these elected voices of the people?
    We can’t wait for that day we have to keep up the momentum,and they need to start listening and( if it’s possible for them) empathising with what thousands of Aussies are going through. Believe in PEOPLE POWER,it CAN and MUST bring the N.D.I.S. to fruition NOW!

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