The NDIS has enabled greater independence and inclusion, but privatisation and provider profiteering are driving up costs and distorting its purpose.
Privatisation has distorted, if not destroyed, the intent of the NDIS and I have watched it happen, closely, over the last 20 years. My family had the privilege, and the challenge, of being involved in the “early roll-out” of NDIS services and I am my granddaughter’s NDIS nominee. Today, I want to paint a picture of one family’s experience of the “before” and “after.”
Most days of the week, my adult daughter forwards a photo of my granddaughter, and every day, it brings me relief and happiness to see her smiling, with her friends, accompanied by a carer, out and about in the world, like most 25 year olds. She’s at the gym with her friends (paid for by our family). She’s walking in a park, she’s at the beach, and my favourite, she’s at a shopping centre with her best friend, sipping a smoothie. The look of joy on her face expresses the special love and rapport she finds with her peer group, like most of us. She’s not one of the “out there” Downs girls. For one thing, she’s elective mute, as well as being a shy, sensitive soul. She does have opinions, and a sense of humour, but she’s subtle, and takes time to get to know. She also can be anxious, have meltdowns, become very upset.
For almost a decade, coinciding with a move interstate for my academic job in the School of Creative Arts at the University of Melbourne, my daughter and I were in a continuous cycle of burnout, where one or other of us looked after “Bec.” It certainly wasn’t a one-parent job, her young father having quickly deemed the situation all too difficult. Her early years, when autism emerged, were a trial, involving a strong impulse in her to escape all boundaries, running away, long periods of not sleeping, ingesting non-food substances, getting up to mischief.
Cute, yes. She looked at yoga postures in books and imitated them. She played “hairdresser” with me and gently combed my hair until I fell into a light sleep, until I startled awake to find her standing in front of me grinning, kitchen scissors poised, ready to cut me a fringe. She used to “be” the family cat. An uncanny mimic, she imitated Tabby’s hiss and ventured rare words to a visiting child. “Be careful. Cat will scratch you.”
I also once tackled her to the ground on a street corner in North Melbourne to prevent her running into traffic. Undeterred, she got back up, forcefully took my hand and pointed to the now-flashing little green man.
When Bec was young, we mostly took her out in a wheelchair-pusher to avoid flight, and made eye contact with other parents and grandparents in “our” newly forged community of people loving and raising a kid with a hundred complex issues, many invisible. We surrounded her, my husband, her mother, my other two children and I, a protective posse because, in those days, any one of us, taking her out alone, might be exposed to the stares, the looking away, or even, on our worst days, a cruel comment or slur. And yes, Bec did notice, and feel it.
The biggest difference the NDIS made is that I’ve mostly forgotten about those experiences, because it has become so ordinary, so commonplace, to see “our people” in public spaces. Attitudes have changed, familiarity has replaced ignorance. To target the particular category of assistance, “Social and Community Participation,” which is the very foundation of inclusion, is a provocation, an implicit slur and a dagger to the heart of the disability community. It’s also a public statement by our Prime Minister, of disrespect, taking no account of the history and philosophy of disability scholarship and activism. We can afford the NDIS if we re-think privatisation, the over-servicing and replication of the bureaucracies and overpaid CEO’s of providers.
It’s not people living with disability who have made the NDIS expensive, it’s the unethical organisations who have sought to profit from providing adequate supports. One example, among many, of our experience follows: a well-known organisation provided a compulsory Functional Assessment. A perfectly lovely but overworked Occupational Therapist attended and drafted a report with the incorrect name of participant, many errors, and advice to book up thousands of dollars-worth of ongoing OT services.
We refused and corrected the report, reiterating that we only needed the compulsory FA. Months after the report was finished, I noticed that the organisation was still billing our participant’s plan. I blocked the company from our plan. We received angry phone-calls, objecting. The provider felt entitled to book up as many services as possible and to take a share of the participant’s plan, indefinitely. I demanded a full account of the invoices. It was never provided. The OT (resigned) admitted that she had been pressured to recommend services we neither wanted or needed.
We can’t afford to go back to the bad old days of group activities in church halls, of lumping together people with diverse needs, of low carer-to-participant ratios which statistically put female participants at high risk of sexual assault. We can’t afford to hide our people away anymore, or force those people currently assisted to live independently, back into care homes, and we refuse to do so.
Sari Smith
Sari Smith, retired in the Fremantle area, has been writing and publishing short fiction, memoir, essays and prose poetry in literary magazines, anthologies and via broadcast radio since the 80’s, and lectured in Creative Writing both in WA and at the University of Melbourne, Australia