Lost in transition

Speech for People with Disability Australia to the Lost in Transition Summit, convened by the ACT Council of Social Services, Friday 26 February 2016 at the Canberra Museum and Gallery

I acknowledge that we are meeting on the lands of indigenous peoples and we respect their elders.

Around a year ago I got an invitation to speak to a conference of people with post-polio syndrome about the National Disability Insurance Scheme (NDIS).

It was a big group some of whom were in the 60’s and 70’s. As I mingled I realised these were people who were founders of the disability movement and who had fought early battles for disability rights. We exchanged anecdotes, memories of mutual friends and war stories.

I saw people who had come up the hard way – who had battled their way out of institutions, for basic access to schools, hospitals and public spaces.

I also saw makes of wheelchairs, calipers, crutches and other equipment that I hadn’t seen since the 1980’s. Leather had been patched.  Footplates had been soldered and I saw a pair of Canadian crutches that had been fixed with duct tape.

They wanted to hear about the NDIS, the campaign and what had been achieved.

So I dutifully did that but as I looked around that room full of people with white hair and equipment falling to pieces it struck me that many of them wouldn’t be eligible as they were over 65.

So I said to one of them afterwards – why are you so enthusiastic about this?

And they looked at me and said well of course we know that but we’re just pleased that after all these decades of fighting that nobody else will have to go what we went through. That for the first time people will have an entitlement to basic disability supports. That they won’t have to beg for equipment and worry about what happens when it falls to pieces.

The point of this story is that the paramount thing I don’t want lost in transition is the reason we are having one.

To replace a system where your disability supports only arrived when you were desperate, broke and broken. Where you’d better get in quick in July because it’s all gone by the end of September.

Transition is hard. It is frightening and it is asking a lot from those of us who work in human services.

Many of us worry for our jobs and that good services will be lost.

As someone who worked in an ILC service that closed despite being busy and – so people told us – pretty effective, I am under no illusions about the risks.

But we must never forget that the NDIS is the Medicare of our day. I’m old enough to remember the relief we felt on the day that yellow and green Medicare envelope arrived through the door in 1984. I remember members of my family crying with relief that they would not have to worry about getting sick.  So it is with the purple NDIS access form that arrived in my letterbox earlier this year.

So while I carry an undimmed torch for the NDIS there are things that I don’t want lost in transition:

I don’t want to lose a good service workforce. A key element of the NDIS is the choice of support provider and control over the terms of supports being provided. In doing this we will be reshaping the market for disability supports by creating demand on our own terms, as opposed to accepting a block funded supply. Some flexibility will be required in order to realise the vision of the NDIS.

However in our experience people with disability value continuity of support and are likely to seek to retain ‘’good’’ staff on a regular basis. They frequently express immense frustration with having to repeatedly ‘train’ new support workers as a result of a highly casualised and transient workforce.

No one should imagine that people with disability are all sitting here waiting for the moment we can mutate into bastard employers.  To do so would not make sense.

Many of us want to employ staff regularly and over the long-term. We want staff who are paid appropriately for their work, and for working anti-social hours. Resentful and disgruntled staff are likely to be more difficult to work with, influence high rates of staff turnover, and ultimately can result in people with disability being put at risk of harm. Attractive working conditions for disability support workers are essential in order to support the shift embodied by the NDIS, encourage the development of a high quality market for disability supports, and to ameliorate the risk of violence towards people with disability.

Employer campaigns to reduce the working conditions of support workers – who include people with disabilities – will be resisted by us in the same way that we resist union campaigns to keep institutions open.

The pricing schedule by the NDIA must support decent wages. When I hear about $16 per hour for some support types that’s not acceptable and it’s not sustainable.

Likewise good services should not be lost in the transition and there are services which cannot be turned into commodities. Economists talk about ”public goods” which are collectively consumed and benefit everyone like fresh air, public infrastructure and street lighting. Likewise there are disability services which benefit either everyone or are essential to a tiny group and for either reason cannot be monetised or pay walled.

These include information services, radio for the print handicapped, advocacy, peer support and bespoke services provided by volunteers – like technical aid for the disabled are in this group. And there are others. The ILC commissioning process is too small and too slow and there is too much handballing of responsibility between agencies. We did not support the NDIS to lose basic services.

Peer support and advocacy should not be lost in the transition either. Advocacy is a system saver for the NDIS and we know from our Citizens Jury that plans where advocates are supporting people are the successful plans.

Likewise people form connections outside of markets be it a family advocacy group helping parents to welcome new children with Downs Syndrome to self help groups such as those gathered in our community hubs. There are also groups of people like those who are deaf blind or who experience disability in an intersectional way – such as LGBTIQ and indigenous people with disability that require support to connect. The role of the DSO network is vital.

Human rights should not be lost in the transition. Services and projects funded under the NDIS must be consistent with the Territories public authority obligations under the ACT Human Rights ACT and the UN Convention on the Rights of People with Disability.

Canberra does not have a tradition of Dickensian places where people with disabilities are moved away from the community to receive disability supports and we have no reason to start one.

Choice is not an end in itself – it is a means. If all we offer people are bad choices then there is no choice at all. At the moment our choices – especially in housing – are very thin.

The final thing that must not be lost in the transition is the ACT Government and our stake in building inclusion and equality. Our obligations as a community to citizens with a disability were not signed away with a bilateral agreement. To their credit this is something the ACT has recognised through Involve Canberra.

We need housing, transport, education and public services that are affordable and accessible. The Territory will always have skin in that game in its role as a provider, an employer and a procurer.

It will increase as our population ages.

If there is a tram then it should model access. If there are more buses they should be accessible buses. If Uber is regulated, then regulate it for access.

We need to drive employment for people with a disability – in government but in community organisations and business across the territory.

We need to reduce the over-representation of people with a disability in justice both as victims of crime and defendants.

We need to make preventative health available to all. There should be no woman who misses out on a breast cancer screening because her local clinic doesn’t have a height adjustable examination table she can transfer to from a wheelchair. Likewise dentists.  There should no people with a cognitive or intellectual disability who find themselves in restraint because they lash out in pain because of an untreated toothache or mouth ulcer.

If our transition takes us to a world of services with no community access then it will have stalled.

For that reason the ACT should retain a Minister for Disability and an engine for cross govt policy for as long as we have citizens with disability.

So let us continue the transition but take a moral compass with us, some trusty tools that work and an undimmed torch of passion for this reform to light the way

Craig Wallace

Craig Wallace is a marketing manager and project coordinator with Nican a national community organisation and has been a community leader with various organisations for more than a decade. He is the President of People with Disability Australia, a leading cross disability rights organisation in Australia and is a member of the ACT BLITS business group.