Asylum: never right, then or now

Today I remembered Oakley.

I had found an article about Australian NDIS (National Disability Insurance Scheme) which I read because I thought I'd known quite a bit about NDIS, yet I didn't really know anything about the history of how people who were disabled were cared for. The article mentioned how the psychiatric hospitals were shut down from the 1970s, and I remembered the Tokanui hospital south of Hamilton in NZ. That one I had driven past quite a few times during the 70s, even before I'd met my first husband. I knew it was shutting down, but I didn't know, until I read up on it today, that it wasn't completely closed until 1998. That seemed strange – I thought I had remembered it shutting down well before that.

I looked up other hospitals in Wikipaedia and found one I didn't think I knew about, the Whau Lunatic Asylum. That had been renamed, over the years, to Auckland Lunatic Asylum, Avondale Lunatic Asylum, Avondale Hospital, Auckland Mental Health Hospital, Oakley Hospital and Carrington Psychiatric Hospital. It had been called Oakley in the 1960s. I knew Oakley. Many years ago, living in my first home (built by my dad), I would occasionally see my Uncle Brian when my Gran brought him down from Oakley Hospital in Auckland where he lived, to Hamilton for a holiday. I went to Oakley one day for a drive with Gran when she picked him up. I have no idea of how old I was, but I don't think I was more than 10. I never had much to do with Uncle Brian, but that was because he died when I was still very young. That was some time in the 60s, I think.

Uncle Brian had epilepsy. Most people who I had met over my future who also had epilepsy didn't seem anywhere near mentally disabled as my uncle was. I never even asked my mum about that, not even when he died. But later I found out how mum had looked after him. She had to take him out of the house where she and her family were living because her mum was to be beaten up by her husband, mum's father. Gran would urgently tell mum to take him out, and mum and Brian would run. Eventually, Gran walked away from her husband and found housekeeping work so she could look after mum and my uncle. She then became a well-known seamstress, especially wedding dresses.

She got married again in the 60s. I remember a photo of mum and dad with Gran and Pop at their wedding. I think it was some time not too long after that – certainly before we moved house - when Brian died in his hospital from an epileptic grand mal seizure. For a few years I didn't believe that happened; I thought that the hospital had hidden him. I never even went to his funeral.

"There is no greater disability in society than the inability to see a person as more."

~ Robert M Hensel

Many years later, after his death, I had worked in an IHC home in Palmerston North when one of the young men in there died from grand mal seizure. He was also epileptic, and very similar to my Uncle Brian. Today I read an article which said that “[s]udden death, a mysterious and devastating outcome of epilepsy, could result from a brain stem shutdown following a seizure”. I thought of Uncle Brian, and the young chap in Palmerston North. They'd both died with very little I knew about epilepsy. I recommend this reading if you know anyone who had epilepsy.

I said at the start of this blog that I had found an article about Australian NDIS (National Disability Insurance Scheme) which I read because I thought I needed to know more about NDIS. This write-up wasn't just about the history – which I thought was excellent because it encouraged me to remember my own history! That article said: “Forty years after community care started, people with disabilities are living longer. Yet in 2009, a report based on consultation with people with disabilities found there was still little social inclusion, poor quality disability services and high unemployment.” That is now something I have personally walked into, after my stroke in 2014, and I know that too many other disabled people live as I do, with little social inclusion, with pretty much no contact or no help about their disabilities and with little or no work. The lack of work for someone as experienced as me cuts too many other disabled people, who have not worked much or at all, out of employment. I remember some articles I have read which glow about how some disabled person has gotten into some very good job, yet that person will say that getting the job was very hard.

Unfortunately, I found out recently that many disabled people have been treated badly. The government says: “We provide financial support and help to people with disability, illness or injury so you can study or find and keep a job.” Would they? Why do they move people off disability pension? Why don't they consider that a person who was on disability pension is still disabled?

  

"Being disabled should not mean being disqualified from having 

access to every aspect of life."

 ~ Emma Thompson

So if a person has been moved from the disability pension to the Newstart, are they still eligible for NDIS? I don't think so. Is this what the government/Centrelink has started doing, just to save themselves some NDIS funding?

The legislation, called the NDIS Act 2013, (available) was passed in March 2013 when ALP was still the government, and revised in May 2013, still under ALP. When LNP won the election the Act was superseded and compiled 5 times since September 2013. There is a full website which includes a history page. The details at the bottom of that page gives, for me, a frustrating change of the name: “After the Federal election on 7 September 2013, the incoming Government discontinued the use of the name 'DisabilityCare Australia', reverting to the National Disability Insurance Scheme.” I would have stuck with DisabilityCare Australia because, for me, that showed that the scheme was set up for care, not for insurance.

The NDIS website gives information about what NDIS means and what it is here for. In June 2013 821,738 people received DSP. That has dropped, and the approval of DSP is much less than it used to be, even when people with real disability applied. Now the NDIS website says only 460,000, aged under 65, would be eligible for the NDIS support. There is no connection to the government change of retirement age. Why not? And how are so many people on DSP not eligible for NDIS?

NDIS isn't available in every Australian area until 2019. It is being introduced slowly, and the growth isn't as high as NDIS themselves said it would have been. From 2014 the government gave information about the increase in the pension age – from 1 July 2017 that will be 65 years and 6 months. I reach the new retirement age of 66 years and 6 months on 1 July 2021. So for other people this affects, is the NDIS eligibility missing between 1 July 2017 and 1 July 2023? Is this leading to more people cut off NDIS?

The NDIS website provides an “access checklist” so any person who claims they have a disability can see whether or not they are covered by NDIS. The huge problem is that any person in this country who is now on DSP, is not eligible for NDIS if they do not have a permanent (lifelong) disability. And that, the worst of NDIS, seems to have been the reason that so many people on DSP have now been moved off. Even if they are disabled. Even if their disability might be lifelong.

If they aren't eligible for DSP, they will never receive NDIS support. And many who are eligible for DSP but for less than their lifetime, will never receive NDIS support.

“Asylum” in the Oxford dictionary is defined as “Shelter or protection from danger:‘we provide asylum for those too ill to care for themselves’”. Despite every “asylum” hospital closed, despite the fact that so many disabled people have been cut off from help, no disabled person can claim asylum. It doesn't happen. NDIS should have been set up as an “asylum”. It wasn't.

Never right, then or now.

 "Disability only becomes a tragedy when society fails to provide the things needed to lead one's daily life."

~ Judith Heurmann