Heike Fabig and her daughter Billie with her Pets as Therapy Dog Jenna, pictured in 2011.
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.
This was only a tiny first step on the road to a fully fledged scheme.
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.
Passing the buck? ... Barry O'Farrell. Photo: Alex Ellinghausen
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.
Heike Fabig is the mother of three children, two of whom have a disability, and is president of the Association for Children with Disability NSW.