John Maloney: I recall numerous tragicomic dealings with the machinery of disability care I am a 30-year-old lawyer living in Melbourne. I have spina bifida, which among other things means my legs are partly paralysed (so I walk with crutches and knee-high splints), and I have a heightened risk of joint, nerve and organ damage.
The 2011 productivity commission report which galvanised the move towards the NDIS concluded that Australia’s disability care system was “underfunded, unfair, fragmented and inefficient”.
My experience has been that despite the best efforts of a committed minority, these epithets ring very true. I can recall numerous tragicomic dealings with the machinery of disability care. I once waited six weeks for a replacement crutch after one broke in a fall; near as I could figure out, the delay was caused by my initial query getting lost in the system, and the subsequent necessity of sending an occupational therapist to my home to confirm that crutches were in fact necessary (I would’ve been happy to have been proven wrong on that, but it wasn’t to be). More recently, suffering the effects of worsening scoliosis, I have been told that scheduled rehabilitation sessions with a physio team have been cancelled because the criteria for rehabilitation have shifted to a threshold I (not imminently requiring surgery, or a casket) no longer meet.
Whether these kinds of episodes (and the many much more serious ones faced by others) will be helped by the NDIS remains to be seen. Giving funding directly to disabled people, rather than service providers, is a promising idea for a number of reasons: it stimulates competition in the sector, hopefully bringing pressure to bear on sluggish bureaucratic service providers; it allows users to circumvent a slow chain of referrals to get to the provider they want. But a proliferation in service providers, especially “for-profit” ones, might make the system more confusing and treacherous for those who don’t have the time or capacity to find what’s best for them.
And it’s no good having money to spend when there’s nothing worth spending it on. What’s needed is not just redistribution of resources, but substantial and sustained investment across the sector: in training researchers, teachers and professionals, and incentivising excellence in their professions; overcoming chronic shortages in disability housing; providing disabled people capable of sufficient and satisfying work with improved access to employment opportunities; and continuing to improve standards of prenatal and early childhood care, so as to ensure disabilities which are preventable are prevented, and disabled children are appropriately supported from the beginning of their lives.
Naomi Anderson: DisabilityCare sets the tone
It is exhausting to both tell our story over and over again, and to have to wait in the queues.
At the public hospital: “If you are unable to attend both of these appointments for medical reasons please provide us with a medical certificate. If you are unable to attend for other reasons we will only assume that working towards a new wheelchair is not a priority, and we will discharge you from the service.”
This is regarding an appointment about a wheelchair, in order to obtain a recommendation to apply to be placed on the waiting list for funding for said wheelchair – a list that could be years long. We started the process in October. We cancelled the last appointment for a university exam. Apparently that won’t cut it next time.
On the phone with the state government: “please hold, you are the first caller in the queue.” For two hours. One operator. Our application for a person to start the process to apply for a review is waiting allocation. Since January.
From the tram company: “Oh no, none of the trams on that line are accessible. But yes, the tram stops are.” So I drive my daughter to university.
From the local council: “Yes, we are two months behind in issuing replacement disabled permits. If you are ticketed, just write us a letter.” And when I park in any other council area? “Oh, we have no control over that.”
And then I open the newspaper. Retail giant Myer is upset about a campaign for employment of people with disabilities. I am upset too. That my daughter has never worked. That I am not working. That I have to be overly involved in the life of a young woman who should have more independence. That unless I break down, often nothing happens at all.
DisabilityCare will not change all of this. But it sets the tone.
ClaireinOz: It won’t be rolled out until 2016 where I live, which is frustrating
My daughter, Imogen, is 14 and has velocardiofacial syndrome – entailing significant physical and intellectual developmental delays and other symptoms, including impaired movement from severe scoliosis.
I found out today that DisabilityCare will not be rolled out in our area until 2016, which is frustrating. Imogen is in a support unit at a mainstream high school, but she is unable to get herself to and from school, and cannot look after herself.
My need is for out-of-school-hours care so that I can work as a casual teacher. Most of the care organisations in my area are funded for respite, which is very nice – but if a parent cannot work, they have no need for respite. Recently I was offered three days per week after-school care by two different bodies, but this is not doable on a casual basis, it has to be for set days each week.
As a result, I am looking for local school-hours-only employment (that is, office work), which is on a par with hen’s teeth, or a highly paid communications position in Sydney that will enable me to employ a live-in carer. We have made use of this arrangement before, and it is not eligible for child care benefit, making it very expensive.
Helen O’Brien: the anxiety surrounding my daughter’s future will be lessened
Last year, after a disparaging and futile bout of trying to navigate the “non-help” offered by various government departments, I decided to read the productivity commission’s report on the NDIS. I was relieved the commission recognised how fractured current systems were and that a socially progressive policy might allay the lifetime burden on informal carers and genuinely help those with disabilities realise their dreams of being ordinary citizens.
Our own situation is complex. I say “own” because, although the disability affects my daughter, the entire family is involved in her life-long care. While she has a rare disease, other medical problems and was diagnosed “passive” autistic, her main disability is intellectual. While some disabilities are more obvious and have quite specific and tangible needs, an intellectual disability is more elusive, and the consequent needs relate to long-term planning rather than just immediate facilitating aids. She is close to adulthood, yet is not much bigger than an 11 year-old. Her functional capacity is probably low to mid-primary school at best. In the home, her life skills are comparably non-existent and outside it, she needs constant supervision.
She asked me the other day if her sister would look after her when I’m gone. I assured her that I wasn’t about to depart, but it is a rather sad thing for a child to have just enough capacity to know that they will never be independent. As my own working life has been chequered by the serendipity of her disabilities and illnesses, I hope the red-tape labyrinth that paralyses and demoralises other departments and organisations will somehow be avoided by DisabilityCare. We are in a start-up region, and while I can think of quite a few measurable effects of the plan, it is the impalpable lessening of anxiety surrounding her future that we welcome most.