Opinion | 27 July 2016

WA need our perspective, not theirs

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Around the country, disabled Australians and their families were celebrating. Australia is #ndisready, social media proudly proclaimed. A sea of purple signs, bearing the words ‘I <3 ndis’, rolled across our computer monitors and television screens.

But in Western Australia, the celebrations were bittersweet. We’d campaigned just as hard for a national scheme, but our rollout – the rollout of a scheme yet to be determined – has been delayed by at least a year. There are no guarantees or promises that we won’t be worse off than other Australians, and many of us feel as though we’re in limbo waiting for forces beyond our control to make decisions about a scheme that will impact upon the rest of our lives.

The official line is that our trials have been extended for another year. The Commonwealth and Western Australian State Governments are running parallel trials of two schemes – NDIS and ‘WA NDIS’ (formerly ‘My Way’). They’ve been extended to additional locations too. Down the Armadale, Murray and Serpentine corridor in one direction for the WA trials. Up to Bayswater, Bassendean, Chittering and Toodyay, Northam and York for the federal trials. They say that the expanded trials will allow a further 2,700 people to access the NDIS in WA. They say the Minister will make an announcement ‘about governance’ in October. They say that ‘independent assessors’ are comparing and evaluating both schemes.

Who is listening?

But what are we saying, the people who will be directly affected by this scheme? And who is listening?

Our new Disability Services Minister, Donna Faragher, has made the very wise decision to use her own resources and find out for herself. The Ministerial Advisory Council on Disability (MACD) are engaging community members to have their say on service delivery and key improvements to the scheme.

People with Disabilities WA also continue to ask their members what they think. With other advocacy agencies and not for profits, they’ve been investigating system design issues, experiences of obtaining information and experiences with the planning and plan implementation process. There’s no clear indication that one model is performing consistently better than the other, with strengths and weaknesses identified in both schemes.

As a disability advocate who has been involved in the design, development and rollout of the NDIS, I’m just as confused as everyone else.

I sat on the Workforce and Sector Capacity Expert Group during the design of the NDIS. I’ve attended hundreds of CEO roundtables and forums and workshops on the NDIS. I am one of several disabled people who run and administer the NDIS Grassroots Discussion Group, comprised of almost 15,000 members who are sharing information daily. I speak with disabled people and family members in both schemes daily. I probably know more about the legislation and design and implementation than most people.

But when it comes to knowing what disability services in WA will look like two years from now, I’m in the dark.

Here’s what we’re saying on the ground.

On Facebook groups and at coffee meetings, at peer support groups and around kitchen tables. There are rumours and gossip and official secrets and real information packed into a confuseopoly labelled ‘what’s happening now’ and ‘what’s going to happen in the future’.

We’re complaining about implementation and system design issues in both schemes. Way down here on the ground, where the folks at the top can’t see without a telescope.

We’re saying that we want real choices and real control. We want real choices about who our providers are and we don’t want to be told that we’re stuck with the status quo.

We’re saying we want control of our funding – not necessarily just self-management, but also flexibility about the use of our funding.

We’re saying that we’re tired of listening to representatives from both agencies self-promoting and reciting the same, tired old rhetoric about satisfaction rates at public events and workshops. We want real information.

We’re wondering how you can fairly compare a national trial with a state trial, especially with the vast cultural and geographic differences between trial site areas and differences between systems.

We’re speculating about the design of the survey topics for suppliers and participants as carried out by the ‘independent assessors’ – and whether they are the topics that we’d include if we wrote them ourselves.

We’re wryly commenting about the old language and cultures creeping back into both systems, with people talking about levels and boxes and ways to neatly package disabled people into more conveniently labelled products – and wondering who isn’t being packaged or spoken about at all. Especially people from regional and remote Western Australia, homeless folk, Aboriginal people and people from CaLD backgrounds.

We’re wondering how much influence we will have in the decision making process, and how. Whether it will be others who are making decisions ‘for’ and ‘to’ us, like they have for most of our lives.

And most of all, we’re talking about what our lives will look like in comparison with other disabled Australians.

Like my fellow West Australians, I want clear answers, not rhetoric. Most of the people who are sitting around the decision making tables get to go home at night – their involvement in the disability sector is an opt-in, elective basis. This is about their jobs, but this is about our lives.

It’s about time the WA disability sector and both governments put self-interest and bias aside and started thinking about what is best for disabled West Australians and their families. From our perspective, not theirs.

This opinion piece uses identity first language in accordance with the author’s preferences.

Join the conversation

  • Ingrid Hindell

    If people in Western Australia don’t get the NDIS nobody will be able to move INTO or OUT OF the state! All the rest of the participants will at last be able to shift states. A crying shame! Also an ignoring of a basic Human Right enshrined in the 1952 European Convention.

  • Fed up with lack of WA NDIS

    I have just read about the continued lack of NDIS in WA and as ever am feeling very disheartened by what I read. I have been one of the many in WA to support and rally for the NDIS over the years and yet we have been left with nothing. My disability is a direct result of an operation done in a State Hospital on my leg having gone wrong, leaving me with Chronic Regional Pain Syndrome, Nerve damage, Lymphedema and having to depend on extremely strong pain killers that only dull the pain. I live in pain 24hrs a day. I now walk with aid and have been unable to work, forcing me on to a state pension for the past 9yrs. All I am looking for is an easier way to get assistance and not get caught up in red tape or put on to huge waiting lists so that 6mths later you are still waiting to see a specialist, all because I am unlucky enough not to have private Health cover, and must rely on the Public Health system.

  • Pauline Miles

    From my experjence as an voluntary advocate it us a minfeild.

    What concerns me is that due to mental health block funding and $183,000 funding cut to community services people who live in areas where trial sites are non existence are being turned away from services because they don’t come with NDIS or WA NDIS funding.

    Some NGOs are having to start asking people who are not funded to pay their hourly rate In the region of $20 and hour in order to receive a service. I know this is a fact as I have witnessed this happening.

    Another issue I have is many services are unable to establish how many workers they will need. This is unsustainable as the wages in the social service sector except for CEOs or higher management are very low. Without having a secure income, having to work casual many people do not have the qualifications to work with complex social and cultural issues.

    What about people with mental illness who have being receiving services prior to NDIS trial sites, in many cases are no longer receiving a service.

    Recovery the concept that applies to mental health is at odds with the criteria to be concise red for NDIS funding.

    There are so many mentally ill people who without the services they receive now would be in hospital on a regular basis.

    What we have now is a two teired system. People are on DSP pensions, but if you are lucky you get NDIS and if you do not get NDIS you are a discriminated against becuse you are unable to get support you need or have bring receiving under the old system.

    It’s so unfair and unbalanced. When a person can get a Package of $40,000 per year to support the same needs that person who is just as disabled by the illness gets nothing, and yet their needs are just as great.

    Of course with only 63,000 peolle with mental illness across Australia being eligible of course there is going to be discrimination.

    It is very much dependent on what the clinicians decide about a persons capacity, very often subjective in nature, as can be see. In DSP in Centre Link applications.

    I really feel that the NDIS has not being well thought through or taken into account social and cultural situations.

    Regards

    Pauline Miles

    • Joel Stibbard

      Thank you Pauline. As a community support worker, I feel the same way. For this scheme to work, the NDIA are asking us to work for 2/3 of the costs. Sadly, many workers will be leaving the sector because of this.

  • quadcarer

    No one has even mentioned the NDIS to us, and we are very scared it will mean less carer hours, loss of funding for continence productions and basic equipment like pressure stockings, wheelchair, hoist etc. As it is he is stuck in bed without food or a change if a drainage break when I’m at work anyway, further loss would mean I have to quit work to care for him. Very concerned what it will mean, hard enough to even see a doctor these days with Shenton park closed and all spinal patient files “lost in transit” so ten referral letters and 2 yrs later still waiting.