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23 June 2012, 11.13am EST

NDIS: a step out of the dark

Early on in my career I was part of the process of closing down large-scale institutions for people with disabilities. My first experience of institutions was as a student. I visited Swanbourne Hospital in Western Australia with Bob Jackson, my supervisor who was the superintendent of Pyrton – a large…

Gnsmjrth-1339652419 — Many people with disabilities feel isolated in community residential settings. Flickr/T.R.G.

Early on in my career I was part of the process of closing down large-scale institutions for people with disabilities.

My first experience of institutions was as a student. I visited Swanbourne Hospital in Western Australia with Bob Jackson, my supervisor who was the superintendent of Pyrton – a large training institution for people with disabilities. Bob was hell-bent on seeing institutions replaced with community facilities. He thought it might be good for me to see a really Dickensian asylum to get an idea of why this was important.

Swanbourne housed large numbers of older people with psychogeriatric conditions and severe intellectual disabilities. It’s difficult to describe my shock at being amongst hundreds of people with severe disabilities, wandering in a spartan, desolate environment of perfunctory clinical care with almost nothing meaningful in their lives.

On the day, I stayed close to Bob as I was approached by oddly behaving residents, often only partially dressed. They were quickly shooed away by staff worried that Bob might be offended by them.

Residents lived as a group in enclosures with linoleum up the wall to about shoulder height to make it easier to hose out and mop. Their outside recreation area was a small concrete or asphalt yard with three-metre high walls. At the time, following a long campaign, there was pressure to close Swanbourne and the staff had just been on strike. Volunteers and students who stepped in to care for the residents discovered that many had not been outside of the institution for years.

As Phillip Zimbardo’s classic studies of institutionalisation demonstrated, the staff themselves become institutionalised in settings such as Swanbourne. Ordinary people become desensitised and immune to extraordinarily unreasonable conditions for people who have little capacity to advocate for themselves.

It takes an enormous effort to provide a humane, respectful and meaningful environment in these settings. Not surprisingly most people, like me, who saw places like Swanbourne for the first time, decided closing them down and moving people into community settings was a much better alternative.

The abandoned former Swanbourne Hospital, WA. Flickr/Nate Robert

But closing institutions and replacing them with accommodation and services in the community was only part of the struggle for people with disabilities. Deinstitutionalisation, mainstreaming and integration into everyday settings in the community, including schools, workplaces and recreational and social activities are easier said than done.

Social barriers to participation in work, education, recreation and social activities in everyday life are now the challenge for disability advocates. In many ways, this is more difficult than closing down institutions. Living an isolated life in the community without a job, friends or meaningful engagement is still the reality for many people with disabilities living in community residential settings.

Not only are the barriers preventing social inclusion for people with a disability significant, services are still spectacularly underfunded. The recent Productivity Commission Report made it clear we probably need to double funding for people with a disability if we are going provide them with a reasonable quality of life.

We under-invest in the staff who work in these settings, and there’s not enough emphasis on support services to promote social inclusion in employment, schools and everyday community settings. Young adults with severe brain injuries who need ongoing residential care still end up in nursing homes.

The National Disability Insurance Scheme provides the best hope I have seen in a generation for addressing these issues. The NDIS is a national no-fault social insurance scheme that could provide a guaranteed level of financial support for people with a disability through a national fund. It would effectively create an entitlement scheme for people with a disability based on their needs.

I can recall discussions about establishing a national social insurance scheme to fund disability for at least 20 years with little interest or take up. The success of the current campaign takes my breath away. It is a model of modern agenda setting and advocacy using every strategy and tactic available in the pursuit of an outcome that it’s difficult to argue about. And despite the bad press the Gillard Government has attracted for other things, its decision to proceed with the NDIS will surely go down as a watershed in Australia’s social policy history along with Medicare, superannuation and the aged care reforms of the 1980s.

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Grendelus Malleolus

Senior Nerd

Hal, While I share your optimism that the NDIS may turn out to be a critical step in ensuring support for people with disabilities I have nevertheless concerns about the current level of commitment by the Gillard government and the prevarication of Abbott and the opposition. The Productivity Commission contained some vague phrases such as "reasonable and necessary" that poorly defined are then open to interpretation in a variety of ways.

For example, If a person with a disability living at home…
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Hal, While I share your optimism that the NDIS may turn out to be a critical step in ensuring support for people with disabilities I have nevertheless concerns about the current level of commitment by the Gillard government and the prevarication of Abbott and the opposition. The Productivity Commission contained some vague phrases such as "reasonable and necessary" that poorly defined are then open to interpretation in a variety of ways.

For example, If a person with a disability living at home is currently receiving a HACC support package that includes assistance to shower once a week then the process of implementing the NDIS might see this increase to two showers a week and consider that "reasonable and necessary. Meanwhile, most Australians who do not have disability might consider two showers a week to be entirely inadequate. What one part might considers to be reasonable and necessary may be ridiculously under servicing a person who thinks that a shower-a-day like any other Australian is an entirely reasonable request.

I applaud the NDIS in its intended scope of ensuring that those who receive no services at the moment will at least receive some services, but I also note the explicit clause in the report that recommended no grandfathering of existing services. I am unsure if this will translate from the PC report into the approach to be adopted by the Commonwealth but if it does the concern is that those already receiving services may have to lose some of their package in order to provide the resources to support additional people who currently are receiving no supports at all. In that sense we would be swapping one form of quantitative rationing (the total number of people who can be supported) for rationing of quantity (amount of service below actual needs) or quality (a lesser service than is actually required).

Until these points are addressed with transparent policy it is difficult to have full confidence in the approach.

The remaining concern is financial commitment. The PC report recommended that the Commonwealth with its broader tax base should fund the additional money required for the expansion of direct services to people with disabilities. In arguments about money the Commonwealth will often point to its provision of social security payments as a part of its contribution but I think we need to be very clear that this is an issue of services purchased and delivered, not pension payments. At present States and Territories provide the vast bulk of financial resources. It varies from state to state (or territory) but generally the split throughout the life of the various national disabilities agreements has been 80/20. States have often argued that if the Commonwealth were to increase its commitment to match that of states and territories then there would be sufficient funds - this is roughly what the PC found but as yet the Commonwealth has given no real idea of the full funding of the program.

I want it to work, but there needs to be additional commitment out of Canberra (preferably before the election) to making sure it is fully funded and has robust policy support and full collaboration with States and Territories.

11 months ago report
John Nicol

logged in via Facebook

There is no doubt that the NDIS is a tremendous leap forward in the provision of services for the disabled. It is the implementation of the scheme and the detailed use of that allocated money which is the challenge.

While undoubtedly the "facility" you visited as a young student provide you with an example of an intolerable situation which could be removed by closing down the institution, I wonder if there was any follow up whereby, after closure, you had visited each of those unfortunate people…
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There is no doubt that the NDIS is a tremendous leap forward in the provision of services for the disabled. It is the implementation of the scheme and the detailed use of that allocated money which is the challenge.

While undoubtedly the "facility" you visited as a young student provide you with an example of an intolerable situation which could be removed by closing down the institution, I wonder if there was any follow up whereby, after closure, you had visited each of those unfortunate people who were thus "de-institutionalised" to find out how their lives had changed and whether it was for the better.

The call for such radical surgery on institutions, heralded by those who had, in many cases, very little if any experience of institutions and for whom "closure" was a philosophical argument, even political in many cases, resulted in the removal ov useful services for a large number of very deserving people. Typical of most government directed processes, little or no thought went into this disbandonment which included in its net a significant number of fine institutions which were providing a service far better than could be provided for by individual families, even those who were very caring and provided the very best they could.

Such indiscriminant disbandonment was foolish and hurtful.

Because I grew up a long way from any school, I spent 8 years in boarding school from the age of ten. The discipline was what we would now call harsh, there was no hot water and early morning showers were compulsory, swimming pools were not heated and the food scarce and plain. Yet I look back on my school days as fondly as anyone and have no concer whatsoever for the "institutionalised".life style. My educatio was well served and my life enriched. But yes, life was tough and we enjoyed it that way.

People may scoff and claim that "this was different" but there is absolutely no reason why many of the lesser, closed institutions could not have easily in more recent times, been raised to a standard of care anfd living far superior to my school days. I know a small business man who was brought up in an orphnage in Brisbane because his parents were very ill and could not care for their three children. He reports that he was never happier with friends and three square meals and stayed in that orphange as long as he was allowed to, coming out living off his wits until he could get a real job and work his way upwards.

The spending of the NDIS needs to be controlled by practical considerations, not by political philosophy.

If that is the case, we will obviously see some institutions set up to cater for those who are best served by them with other suitable acomodation of just services provided for others. But please do NOT rule out the equivalent of boarding schools for those who would benefit.

11 months ago report
1. Grendelus Malleolus
  
  Senior Nerd
  
  In reply to John Nicol
  
  John, you know not of what you speak - I'm not going to scoff at your boarding school experience but it is indeed quite a different circumstance. The large institutions of previous years reflected a very different perception of people with disability. Unlike a school they were a permanent place of residence, but just the few years of childhood that you and many other Australians experienced. There was no end to their stay to look fondly back upon. The people who ran the institutions were by and large…
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  John, you know not of what you speak - I'm not going to scoff at your boarding school experience but it is indeed quite a different circumstance. The large institutions of previous years reflected a very different perception of people with disability. Unlike a school they were a permanent place of residence, but just the few years of childhood that you and many other Australians experienced. There was no end to their stay to look fondly back upon. The people who ran the institutions were by and large good people who cared deeply for the people they worked with and many of those who led or worked in these institutions, along with families and people with disabilities themselves, were instrumental in ensuring the end of such facilities.
  
  I don't know anyone who lived in one of this state's many large institutions who looks back terribly fondly - they remember friends and carers, but describe the conditions and far less ideal than what followed - group homes and cluster homes in the Community. We can do better than these also - the large institutions and the changes that followed reflect the changing perception of disability from people who were considered to have a form of insanity - and often kept in a "quiet and chronic" wing and who lived out their lives in a dormatory even though many were and are fully capable of living in the community with support. The abandonment of large institutions for people with disability was neither indiscriminant nor foolish but was in fact driven by parents and families who formed agencies that delivered services in smaller facilities and later on in group homes or supported to remain with families. We also saw a shift to engaging with people wather than just trying to care for them - providing training and support for people to enter the workforce and starting to acknowledge that disability should not be a barrier to a full and good life, a life that acknowledges that we have rights as individuals.
  
  Large institutions do not serivce the needs of the individual, they serve the desire of the state to keep costs down.
  
  11 months ago report
2. John Nicol
  
  logged in via Facebook
  
  In reply to Grendelus Malleolus
  
  Grendulus,
  Thank you for your response. I am sorry that my reply below has turned out to be so long but will post it anyway.
  
  It is undoubtedly true that many if not most people in institutions would not look fondly back upon their life their, and I accepted earlier that some institutions such as the one described by the main author should have been closed. While families and people with disabilities themselves, may have been instrumental in ensuring the end of such facilities, I was totally…
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  Grendulus,
  Thank you for your response. I am sorry that my reply below has turned out to be so long but will post it anyway.
  
  It is undoubtedly true that many if not most people in institutions would not look fondly back upon their life their, and I accepted earlier that some institutions such as the one described by the main author should have been closed. While families and people with disabilities themselves, may have been instrumental in ensuring the end of such facilities, I was totally unaware that it was compulsory for families to place their children in such places, or for handicapped adults to place them selves in one, even though it may be true that there was, in many cases, insufficient support to provide an alternative for those for whom such care was not suitable or at least not optimum. Would it not have been better to look for funding for alternative support, than to force closure of all institutions?.
  
  However, There were a number of caring families I know of who were devastated by the need to find alternative means of accommodating and nurturing their badly handicapped children for whom some form of institution was essential, in any reasonably caring society. I also know of people who have been forced to look for accommodation in some of the forms of places which you describe, I believe, as cluster or group homes, which were much less satisfactory than where they had been, although I do acknowledge, as I believe I had before, that for many, there were better opportunities in alternative accommodation.
  
  I guess my main point attempts to be that by in fact indiscriminantly closing “institutions” (a point you have made but with which I will, unfortunately, continue to disagree) the government was largely involved in a money saving exercise and in many cases threw the baby out with the bath water.
  
  Handicapped persons do have different needs, which I don’t bel;ieve was fully recognised, and by closing anything which could be defined by the term “institution”, of which I think the cluster or group homes are still one kind of model, many people were in fact grossly affected and disadvantaged.
  Many of these institutions of course did not cater for adults and as such the clients were not going to spend much more time there than we did in boarding school, although I acknowledge the difference, which you rightly point out, between those who may have remained for longer periods and my own more fortunate circumstance, and that of the small businessman I had quoted.
  
  My wife is a social worker who worked mainly with children and distressed families while much of this de-institutionalisation took place and was very aware of the down side which seems not to have been acknowledged in the broader community. The closure of many schools and homes which had been established through the earlier dedicated efforts of parents for the benefit of Downs Syndrome children, for instance, has been an abject failure for which there is plenty of evidence from parents who strive to cope with providing help for these children. It was not a matter of finding more suitable methods to help some of the children in these institutions, while maintaining the model and improving it, to provide support for those for which it was beneficial. It was a “one size fits all” approach and the “institutions” were closed, full stop!
  
  Again circumstances change in adulthood, but for these kids there is not much future now with many of the sheltered workshops for Downs Syndrome people – children and adults - for instance, having closed because of reductions in government funding. It will be interesting to see if they can reopen, as a result of the re-organisation through NDIS.
  
  An very relevant parallel to the sheltered workshop in recent times has been the rapidly growing organisation of “Men’s Sheds” which are being organised by volunteer group with Government and Council assistance, to provide workshops in which men with various “problems” (often depression or related illness) may go to work with tools, including quite large lathes, drills, milling machines, welders and other equipment, at least this is the case in the one near to where I live, to aid in stabilising their lives. They also make furniture and toys which are sold to support the centre, much as the sheltered workshops used to do for the mentally handicapped – but not so much now with the new approach to “mainstreaming” in which there are lots of individuals who can never cope and need more structured assistance such as that which can only be provided by an “institution” of one kind or another.
  
  I agree with you entirely regarding attitudes to both mental illness and to physical disability. But the processes and support structures, be they in the home or in some form of group housing, which are going to make a difference, must be, developed from practical concerns for the disabled and not because of some philosophical bent which I believe drove much of the earlier withdrawal of support for many very useful “institutions”.
  John Nicol jonicol18@bigpond.com
  
  11 months ago report
Tim Paton

Automotive Engineer

We need to be very mindful that the current "NDIS" proposal is a combination of two, quite distinct, policies.

First, the NDIS itself. A more equitable way to distribute funding among disabled people. No doubt, this is a good idea, and it to be supported entirely. But it is largely an administrative exercise.

Secondly, is to massively increase funding for disability support.

Together, the two policies will provide adequate (or at least, better) funding to support all people living with a disability.

If the second half of the package deal falls through the cracks... deferred due to budgetary constraints... scaled back... reviewed... sent back to senate estimates for a seventeenth time... the NDIS "revolution" will be little more than a revised slicing strategy for an entirely inadequate pie.

11 months ago report
1. Grendelus Malleolus
  
  Senior Nerd
  
  In reply to Tim Paton
  
  I would agree Tim - It is clear that the level of unmet or undermet demand exceeds existing resource committments and every process reviewing those committments over the last few years has recommended an approximate doubling of funding. Merely shifting the way it is delivered will not produce sufficient efficiencies to address the gap.
  
  11 months ago report
John Holmes

Agronomist - semi retired consultant

Not sure that there has been a decent analysis of the costs of the disabled / mentally ill in our society since the deinstitutionalisation of care.

From personal experience, I have observed a paranoid schizophrenic for a number of years in his interaction with people about him. Sufficient to say that he does take up and exceptional amount of time for those who do not chase him away, plus an incredible amount of resources as he will attempt to sue any one he thinks has done him wrong including…
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Not sure that there has been a decent analysis of the costs of the disabled / mentally ill in our society since the deinstitutionalisation of care.

From personal experience, I have observed a paranoid schizophrenic for a number of years in his interaction with people about him. Sufficient to say that he does take up and exceptional amount of time for those who do not chase him away, plus an incredible amount of resources as he will attempt to sue any one he thinks has done him wrong including layers who have represented him, supreme court stuff. That plus issues re traffic accidents etc. Also throw in a less than perfect command of the English language..

He is not too bad when on medication, but then he thinks he is cured and stops...

Last heard of in Brisbane yesterday where he is broke as he spent most of his monies on the Perth - Bris ticket, and has had much of the belongings stolen/lost. So help $ please.

Taking with people in the mental health system I find out that he is a much greater danger to the unsuspecting than I was aware after looking at some of his legal history. Who is responsible when serious damage is done to a by stander? If you have a dangerous dog, it should be on a leash, or in a secure pen.

So has it been a good move to save $ and dump these people on an unsuspecting community. At the time I remember that promises were made to maintain help for these people. Some are a bit hard to manage when running feral off their meds.

It is time for something better.

11 months ago report
1. Tully Rosen
  
  Non-profit worker
  
  In reply to John Holmes
  
  How would you like to have a cost-benefit analysis done on your rights?
  
  It's this kind of us & them mentality that led to the mass institutions to begin with. Society has yet to take responsibility for people who are unwell. If there were a system that could do more than give your "feral dog" some meds and the briefest of therapies when he is least open to change then he may actually have a chance of recovery.
  
  11 months ago report
Helen James

Project Officer

Hal, I tripped over your article in a completely unrelated search and I very much appreciated what you have to say. I'd like to hope it can deliver what is promised. I have concerns in that people who can't necessarily advocate for themselves will be expected to do so at a time when advocacy has been nearly killed off. What I'd like to see is choice, both supported and integrated accommodation options and REALLY integrated, which really takes a community. There are so many people who currently…
Read more

Hal, I tripped over your article in a completely unrelated search and I very much appreciated what you have to say. I'd like to hope it can deliver what is promised. I have concerns in that people who can't necessarily advocate for themselves will be expected to do so at a time when advocacy has been nearly killed off. What I'd like to see is choice, both supported and integrated accommodation options and REALLY integrated, which really takes a community. There are so many people who currently fall through the gaps as programs are so rigid in who they accept under what conditions based on the funding available at the time. I am unsure as to how this is going to work, whilst at least things won't get back to where they were at Swanbourne and other places around Perth. At the same time where is the respite care, mental health care has serious gaps and issues and where is the value for the workers in this area where there are more jobs being created than in mining? I do see some positives in social enterprises organisations starting up now that should assist greatly in community integration and advocacy so there will be a change in focus. I just hope more than anything it is not more jumping through a different bunch of hoops for the same depleting pool of money.

11 months ago report

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Grendelus Malleolus

John Nicol

Grendelus Malleolus

John Nicol

Tim Paton

Grendelus Malleolus

John Holmes

Tully Rosen

Helen James

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