Severity is a Dirty Word

The NDIS began in 2013 to much fanfare. It was to be the saviour of people with a disability. It was to provide the care, the support, the technology and the wherewithal for people with a disability to be active members of the community. What is more, by investing in people with a disability it was to create jobs and opportunities. More importantly it would allow people with a disability to be active economic contributors to society. There would be a significant return for the investment.

But in the Australian today, if you are to believe Rick Morton, the NDIS is in free-fall. According to Morton the NDIS is becoming unsustainable. He states that there has been an un-predicted influx of young people with autism that were not budgeted for. He also states that there might be a need to tighten the eligibility for people who are deaf and blind. If we do not address these issues, according to Morton, the scheme will be unsustainable.

When the NDIS was rolled out in 2013 it was claimed that the scheme would be assisting 460 000 people with a disability by the time it is fully rolled out in 2019. I have always questioned these figures. I have always thought that the scheme under-predicted how many people with a disability would require assistance. Let us consider some statistics.

The Australian Network on Disability claims that 4 million people in Australia have a disability, that’s almost one in five. It further claims that 1 in 6 have a hearing loss. Australia’s population is 24 million, so that’s 4 million with some kind of hearing loss. Apparently there are also 357 ooo who are blind or have low vision. It is said that 10% of the population have a significant mental health condition. (240 000).

Then consider these figures from The House of No Steps –

  • Every week, 5 Australians sustain a spinal cord injury [2]
  • Every week 10 – 15 Australians sustain a severe brain injury [2]
  • Every 13 hrs, a child is born with cerebral palsy [2]
  • 1 in 1000 children born each year will have Down Syndrome [2]
  • Every 7 hrs, a child is diagnosed with an autism spectrum disorder [2]
  • Every 2 hrs, a child will be diagnosed with an intellectual disability

In 2012 the Australian Bureau of Statistics estimated that 115 400 Australians had Autism. Then we need to consider wheelchair users, neurological conditions, acquired brain injury and so on. It can be argued that the figure of 460 000 used by the government to justify the establishment of the NDIS and set budgets was nowhere near adequate.

I remember discussing this issue back in 2013 with a prominent Deaf advocate. We were discussing the fact that there were a few million Australian’s that had a hearing loss. My argument was that  many of these “few million” would require support. The advocate kind of poo pooed me aside. She believed that most of these would never need the NDIS. It was almost like it was only the people who had severe to profound hearing losses who would require support.

I felt then, as I do now, that her view was nonsense. Indeed it worries me when people stand in judgement of the impact of a disability. How do you measure the impact of deafness, or indeed any disability? Do we just come up with a broad assumption that it is only those with more severe hearing losses or disabilities that are impacted significantly?

Such an approach is fraught with danger. In years gone by I worked on a program for youth who had a hearing loss. I was always struck by the fact that it was often young kids with so called “lesser” hearing losses that had the most issues. There was an expectation of them that they could hear and cope, so therefore they were OK. But often they were not.

They would tell me how they struggled in noisy classrooms. They would tell me how their self-esteem was impacted because they struggled socially to communicate with their peers. They would tell me that teachers would often refuse to wear FM systems, because “they could hear just fine”. They would tell me how teachers would refuse to look at the class and talk to the board thus denying them the abiliy to lipread. They would tell me how they struggled in sporting clubs because they could not wear their hearing aids while playing and how this made it difficult to socialise. Often they would tell me they felt dumb because they were struggling at school from communication issues and were labelled lazy or inattentive.

What became clear to me was that the level of one’s hearing loss was not really a good measure of the impact of the hearing loss. I know of one person with a so called moderate loss who was a speech assessor. He has a degenerative hearing loss which at the time was bordering on the moderate range. His job was to listen to recordings of telemarketers and coach them to be able to convey their voice better. Of course it became increasingly difficult to do this as his hearing loss worsened.

He would speak of the difficulties he had socialising in restaurants and bars where his friends liked to frequent. He would tell of the difficulties communicating in noisy environments and how this had steadily led to him withdrawing and keeping his own company. This led to depression, loss of confidence and the need for intensive counselling.

It always concerns me when people like to judge the impact of one’s disability based on it’s severity. It does not follow that a person with a more profound hearing loss will require more support. It just means that they require a different type of support but that support is every bit as necessary. Then of course there are the additional costs. The hearing aids, the batteries, the audiology, the listening devices, the repairs and so on.  Often it is those with so called lesser hearing losses that have the need for the most up to date listening technology and it ain’t cheap.

If this support is not provided what happens to these people. Perhaps they become unemployed. They become socially isolated. They  may need counselling and medication if their depression becomes severe. In extreme cases suicide is not unknown. You cannot judge an impact of a disability solely on its severity. By investing properly in these people so that they get the right support it can be argued that he greater social cost can be avoided and this is both financial and moral.

It is for this reason it concerns me that Morton, in his article, is suggesting that some deaf and people with a vision loss will be deemed ineligible simply because there is a desire to reduce costs. When one starts to try and judge the impact of a disability based on some perceived level of severity we are on rocky ground. And this rings true whether it be autism, intellectual disability, mental health or physical disabilities.

That is the whole idea of the social model of disability on which the NDIS is based. It is supposed to look at impact and challenges to social and economic participation. This cannot be assessed on the severity of disability alone. To do so is to fall into the trap of the medical model of disability and to fall into this trap will kill the NDIS stone dead. Severity is a dirty word!

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2 thoughts on “Severity is a Dirty Word

  1. This article is very interesting but the issues are, unfortunately, not new. I am a parent of two children who are constantly labeled as “not deaf enough” for any support. Their success up to this point has been purely due to hardwork from myself and amazing support from the Deaf community.
    It is a shame that people who make the decisions don’t listen to, or acknowledge those that have real experience and know what they actually need.

  2. Interesting read. Would this prominent Deaf advocate, by chance, be a hearing person? If so, the answer is already there.
    If the prominent Deaf advocate is somewhat deaf, then she hasn’t really absorbed the full impact of disability or Deaf culture. For instance, a HoH person would not have the full understanding of Deaf culture unless they fully immerse themselves into the Deaf world.

    Keep in mind, everyone has a different view on many things. I quote from Orange is the New Black, “We may view this killer as a bad man, but himself and those close to him would view him as a good man!” Therefore, what one views about severity differs between others. This thought alone, is a scary thought. For instance, two fully fledged Deaf people who have been immersed in the Deaf world since birth, still may have different views on how Deaf people shall be entitled to such support from NDIS. We need some kind of consistency here so everyone could be on the same page. Differing thoughts achieve nothing.

    Lastly, I always question those people who study disability when they do not have the first hand experience of being disabled themselves. For instance, the people at EAF. They are qualified by studying at university, but none of them have first hand experience – in particular, the deaf field. Further, they are pressured by the Govt to ensure they minimise spending and rely on USA’s Job Accommodation Network (JAN) for examples. No matter how one argues, the people at EAF makes the final decision and usually inept at that.

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