There’s a war going on.
You might not see the war, because it is a complicated political war, with nuances deep within the disability and government sectors.
Wars are organised conflicts that are characterised by social and economic disruption. There are often prisoners, who are held to isolate them or exploit them for their labour. And in all wars, there are casualties.
I read this article by NSW Minister John Ajaka this morning. Mr Ajaka bemoans the politicisation of disability in NSW, and reminds the population that the NDIS has nothing to do with the closure of institutions like Stockton, tells us that he doesn’t want to get the positive NDIS stories get lost in a political battle. So far, all good.
Then half way through the article, there appears a line that makes me blink and look twice.
‘Regardless of the NDIS, large residential centres are being redeveloped and every existing resident, including the high-needs clients, will be catered for.’
Excuse me, Minister? You said…what?
For those who don’t know about the history of institutionalisation and devolution in NSW, I’ll give you the short version.
During the 1990s, the NSW Government came under pressure to fund the transition of the state’s (then) 47 institutions for people with disability in the wake of a succession of public scandals associated with abuse and neglect at these institutions.
In 1998, the NSW Government made a commitment to close the institutions by 2010.
By 2006, the NSW Government said that they’d changed the timeframe from 2010 to ‘over time’. They said they’d look at a wider range of accommodation and support models, because the nature of institutional care restricts the rights and opportunities of the people with disability who live in these settings.
By 2010, there were still over 1600 people with disability living in institutions, with the largest centre holding over 400 people.
Then came the NDIS –and with it, the agreement struck between O’Farrell and Gillard for NSW to transition all of its disability services to the non-government sector by the NDIS implementation deadline in 2018.
And therein lies the cause for the war. Parents with aging children at Stockton protest strongly that the institution is their home. Nurses and staff at Stockton protest that they will lose their jobs. Disability advocates protest that institutions are outdated models of care that are proven to restrict human rights and community inclusion for residents, and so the battle carries on.
Here’s the bottom line – the NDIS and the closure of Stockton and other institutions is undoubtedly unrelated – the closure of Stockton was decided fifteen years ago, the NDIS is not tied to bricks and mortar. But once the institutions close, it becomes related – because what then?
In 2013, Ajaka argued that institutions ‘have long been viewed as antiquated models of care’ and that other models of care like group homes ‘are able to be situated in the community, which offers greater inclusion for people with disability and opportunities to participate in what their local community has to offer’.
But today, it seems that he’s changed his mind – or at least his public viewpoint.
‘Regardless of the NDIS, large residential centres are being redeveloped,’he says.And some of the devolution stories to date back that up – stories of institutions closed but others reopened ‘further away from town’ or slightly smaller. New ‘innovative’ centres with sensory gardens and fresher paint. Lipstick on a pig, some say, when people are still physically separated from the community, when large numbers of disabled people live together with little private space, set routines and restrictions on personal freedom and autonomy. When people are not encouraged to be part of the rest of the world or develop relationships or social networks outside of where they are shut in.
We close the institutions, and what then? The State is saying that it no longer has a role, because the NDIS will be the panacea for all evils, including institutionalisation. In other states, like WA, government is privatising only sixty percent of their residential services. Despite the fact that the majority of abuse and neglect has occurred in government settings, many people with disability and their families are against wholesale privatisation of government disability services because there will be no ‘place of last resort’. The place that people who have no family or who are ‘complex’ people can go if a non-government provider refuses to accept them. If we are not included in affordable and social housing or shared equity and partner arrangements, or afforded adequate and appropriate support, what then?
The stories roll in. Parents and staff protesting in the streets. Human rights advocates protesting the failure to close the institutions and the dressing up of bad old models. Politicians trying to assuage angry voters with stances that waver when votes or funds are at stake. A war played out through newspapers and union meetings and dark meetings in government offices.
In this war, you cannot see the casualties and prisoners of war. They are hidden behind old style ha-ha walls, shut in behind best intentions and political gain and fear and anxiety. Their gatekeepers are soft-spoken and well meaning, but isolate them from freedom and advocacy as effectively as if they were wielding machine guns.
We must shut the institutions, and we must ensure that people with disability have the right to support and the same freedoms as the rest of the community. And we must, together, work out a way to do that.
“It took a while to get used to living in the community…for most of my life, I did not know what happiness, friendships or choices were.” - Kim Walker, a former resident of Stockton Institution