N is for National. The National Disability Insurance Scheme, or the NDIS, has been touted as Australia’s largest social reform in the country since Medicare. A fundamental policy change with support from the left and right sides of politics plus a bilateral agreement. However, Western Australia (WA) – also known as the ‘wait awhile’ state – certainly is waiting awhile. There have been dates on the calendar circled for key announcements about the State versus Federal trials, but we still wait awhile.

Since the beginning of the trials there has been a number of highlights and milestones shrouded by confusion – made more complex by the changing terminology and conflicting information. The State trial, first titled MyWay, has now been rebranded to WA NDIS. In the very early days, Kalgoorlie was pinned as a trial location, but was promptly dropped before it was implemented. More recently in 2016, the delays of projected milestones have been overshadowed by the expansion sites of the two Government trials. WA is the only State or Territory that has not signed up to the NDIS, leaving some participants wondering if the N in WA’s NDIS is in fact an oxymoron.

News headlines over the last years have included “My Way or the high way for NDIS: leading disability services provider” (June 2015), “WA should go its own way rather than NDIS, disability advocates say” (August 2015), “WA rejects disability takeover” (March 2016) and “NDIS rollout delayed in WA as trials extended by a year” (April 2016). The disability sector seems to be full of acronyms and name changes. The National Disability Insurance Agency (or NDIA, the Federal body that administers the fund) has Local Areas Coordinators (LACs) – a role title that has been in WA for decades under the Disability Services Commission (DSC). The LACs in WA are now referred to as Local Coordinators or LCs. The Federal Government has the ILC (the information, linkages and capacity building fund), WA has the ILC (the Independent Living Centre in Nedlands). The Federal government has MyPlace, the NDIS online participant portal – not to be confused with My Place, a WA disability organisation that is funded by DSC and NDIS. MyPlace, the NDIS online portal, famously failed for several weeks under time pressures. This meltdown saw thousands of payments not being received in July and August this year. Any sense of confidence in the system was seriously rattled by this IT debacle.

D is for Disability. Under NDIS, people with a lifelong disability will receive reasonable and necessary care to support an ordinary life. What constitutes reasonable and necessary has had incongruences between individuals, disability professionals (such as therapists) and planners signing off on an NDIS funding package. Anecdotes from the participants feature concerns about the inconsistencies in advice, meeting methods and disability items deemed reasonable and necessary. Teething problems are of course expected in any major reform – we can only be hopeful that over time these bumps and waves become few and far between.

I is for insurance. I often remind colleagues, peers and other advocates of this – and that it does not stand for individual. Although this is individualised funding, the NDIS is an insurance scheme. An insurance scheme is a transactional model that safeguards people in the event of a situation, such as the onset of a lifelong disability. Insurance schemes are safeguards not only for the participant but also the insuring body.

S is for Scheme. Many people with disabilities and families have loudly expressed concerns (on social media and news websites), commenting on the behind-the-scenes ‘scheming’ that has recently been revealed this week. The reappointment of the NDIA Board saw the exit of Bruce Bonyhady, also known as the ‘grandfather’ of NDIS. Replacing the evicted Board members are the appointment of a number of Board members linked to companies such as Veda Group and Optus. Large groups of the grassroots community are disgruntled at the lack of representation by people with disabilities and very rightly so. The justification of the new Board was for the cleanup and accountability for the blunders to date.

By some, the NDIS has been described as a lifesaver and by others as a disgrace. When the WA decision is finally announced, the hybrid promises to ensure that West Aussies will not be disadvantaged. Again in WA, we wait awhile – a long while.

Caris, Care Collective co-founder

Care CollectiveCare Collective is made up of a diverse group of WA people who are passionate about informed choice and real control for Aussies living with a disability and their families. The idea came from conversations between friends, a few living with a disability, a couple of mums of children with a disability and advocates. We often spoke about the difficulties in finding the right supports and services. Over many coffees, lunches and San Churros, we shared our experiences and visions for the future under NDIS. In November 2015 we won the RAC SeedSpark ‘Better WA’ category and in 2016, Care Collective was born!

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