Fears are Justified, Says PWDA President

This week, I spoke at the Joint Standing Committee on the issues around Independent Assessments.

I spoke not in my capacity as President of People with Disability Australia, nor as a board member on any of the other boards that I sit on. I spoke as a disabled woman and a carer who, like many of us, has spent a lifetime battling disability and mainstream services and systems.

Well informed, experienced and passionate advocates, academics and disability professionals from Western Australia made submissions to the Joint Standing Committee. Many were people that I know well, or had worked with in the past.

All of them were unanimous in their condemnation about the proposal to introduce mandatory independent assessments.

Kim McRae, from the Alice Springs headquartered Ngaanyatjarra Pitjantjatjara Yankunytjatjara Women's Council, told the inquiry that she did not believe that the model was proven or culturally appropriate in indigenous contexts.

Emily Carter, CEO of the Marninwarntikura Women's Resource Centre in WA's remote Fitzroy Valley, says that the proposed model will fail families and that the proposed model risks preserving systemic racism.

Brendan Cullinan from People With disability WA called for an independently appointed, external expert to carry out the evaluation of the proposed model, as well as full transparency of the data and modelling.

Nick Avery from the South West Autism Network outlined a comprehensive range of issues for autistic people, including issues with the standardised assessment tools, which were never designed to translate functional assessments into dollars.

Dr Lauren Rice from the University of Sydney agreed, saying that the types of assessment tools selected 'made up only one part of the puzzle' and was culturally inappropriate.

Many others spoke, saying the same thing. The disability reforms and independent assessments that are planned should be halted, and so should the pilot.

The next day, the NDIA released a statement, which addressed none of the concerns raised around cultural appropriateness, assessor expertise, the independent assessor model itself or the calls to immediately halt the pilot and for the sector to appoint a truly independent expert to scrutinise the plan.

Instead, they focused on comments around the safety of participants, which they assert is 'unfounded and could cause unwarranted concern amongst Australians with disability and their families'.

I vehemently disagree, and so do many others. I know that the prospect of going without support will have adverse effects among our community members and that the proposed reforms are likely to cause far more concern than the very real possibility that disabled lives will be endangered.

There is significant evidence to support this, as presented by almost 200 disabled people, family members, peak disability bodies, service providers, allied health professionals and academics in submissions here. And we hear accounts every day from members of our community that support these concerns.

Like others, I refute the idea that the disability community is 'running a scare campaign' or causing 'unnecessary concern'. This is why.

My testimony included a response to recent news that the NDIA would (generally) cease to fund generators, double beds and a range of other supports and services that had previously been provided as a reasonable and necessary support for disabled people.

One example given on the NDIS website to support this rationale was about a ventilator assisted child, who had had a series of power disruptions in the area where she lived. Jane's mother had asked for funding for a backup generator.

The NDIA asserts that provision of the generator was not their responsibility, because it was the responsibility of the states and territories to provide power and support for emergency medical equipment.

I have limb girdle muscular dystrophy. In 2014, two young men that I knew in Western Australia died in a storm in Perth when the power went out. There was a backup generator, but it relied on being switched over.

Conor and Kyle died because of lack of oxygen and rationing of resources. They were both 25 years old.

I know, because I am part of this community, what this looks like in real life. For real seven year olds like fictional Jane, when they aren't allowed on the school bus with an oxygen tank. For people like the ventilator assisted quadriplegic who lives in my country town. For my friend Shane, who is a C1 quadriplegic and uses a ventilator to breathe. For the hundreds of people with spinal muscular atrophy and muscular dystrophy and nemaline myopathy.

I know what our lives look like, because I am part of this community. The NDIA is not.

Since Conor and Kyle's lives were lost, many people who need oxygen have had their lives improved through the NDIS. That includes emergency provisions and safety provisions like backup generators.

Australia is increasingly ravaged by bushfire, flood and other national disasters. A decade ago, my town lost forty homes. Power was out for hundreds of people for many weeks.

This IS a life or death issue - it is not the same as asking the States for a pack of cards to play around a candle when the power goes out. We require care and support because we are disabled, not because we live in a particular region.

It is not the responsibility of local government to provide disability care and support, nor aids and equipment. We are talking about seven year old Jane, who is dead in her bed in a storm no matter who fails to fund her back up ventilator.

If you looked at this as a bureaucrat, you would be looking at big ticket items to cull, rather than the intent of the scheme - to fund the gap between a disabled life and an ordinary life - and offload it to the States.

But if you looked at this in a genuine co-design sense, you might find out that the Ventilator Dependent Quadriplegic Community Care Program in WA is funded by Health, under the bilateral agreement. Or that there probably haven't been many backup generators funded as aids or equipment, proportionately. That many ventilators and machines now have back up mechanisms that will be sufficient.

Who will die, then? Well, it will probably be an Aboriginal child who lives somewhere like the Fitzroy Valley, or another regional or remote community. Or that old quadriplegic who has never bothered to update his breathing machine because he never wanted to ask for too much from the government and this does him just fine.

These aren't unfounded fears.

Neither are the stories that were relayed about members of our community by Bill Shorten at the National Press Club this week. Mr Shorten has clearly listened closely to members of our community, including the parents of 23 year old Liam Danher, the families of Tim Rubenach and David Harris. All of those men should be here today. So should Ann-Marie Smith, who was just a year older than I am.

They are not unfounded fears, because we know and understand disability and what we need to support us better than any bureaucrat, government official or politician. To say otherwise is deeply offensive.

When you discount those real, validly held fears, you are saying it to Nat, who still sleeps in her own wheelchair. You are saying it to those living in crisis and terrified for their futures. And you are saying it to me, my family and our community.

There are other, very real concerns that are not being addressed or identified in the media or by politicians, because the changes are rolling out at startling speed, despite the assurances that they have put them 'on hold'.

Like the announcement that they would refuse assistance dogs to anyone who has been in hospital for suicidal ideation or self-harm in the past twelve months, which is much like saying they'll refuse a pacemaker for anyone who has been in hospital for a heart condition. I have spent some time refuting the media statement released last week, because there are some very serious concerns that have not been discussed - certainly not with the communities affected.

We reject the premise that the scheme is unsustainable, nor that expenditure is attributable to extra numbers of people or rising costs of disability support - nobody ever says that Medicare is unsustainable, despite rising costs. The raw scheme data, now held by a privately sourced NDIA actuary, must be made available to be scrutinised by the States, Territories and disability community - and should be scrutinised by independently appointed experts.

We do not want any more support that is reasonable and necessary, but reasonable and necessary must be determined by the trusted clinicians and health professions of our choice, not appointed government assessors who may not hold the required expertise.

Most importantly, we must be the people who are considered the experts in our own lives. Our support must be determined not only by our impairments but by our lives, in conjunction with qualified and trusted professionals.

A program of co-design must be immediately enacted and the trials must be halted. Disabled people must be listened to. I hope that our new Minister, the Hon Linda Reynolds MP, listens closely to our community when she meets with peak bodies today.

This scheme is a scheme based upon the rights of people with disability. We fought vehemently for the right to be authors of our own lives, for a National Disability Insurance Scheme that gives us the support we need to be who we are.

We will not be compromised on the right to be supported to have a fair go, like any other Australian.

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