The Rebuttal

Dr Stevie Lang Howson is disabled. He lives with autism and has a genetic condition known as Ehlers-Danlos syndrome which was diagnosed in 2021. The latter impacts on his mobility and independence. Over the years it has gotten progressively worse. It got to the point that by 2023, Mr Lang Howson required a wheelchair for his mobility. In his words – “I had just gotten my first wheelchair because I could not remain standing or walking long enough to get my child ready for school or make his lunch in the morning. I bought it second hand, with the guidance of an occupational therapist.”

Mr Lang Howson initially received NDIS support in 2019 for his autism. The Ehlers-Danlos syndrome had yet to be formally diagnosed. Although he was experiencing mysterious severe fatigue and progressive mobility issues, these could not be explained.

In 2023 Mr Lang Howson requested supports for his mobility issues from the NDIS and was told that he had to reapply with new evidence. Although his needs were obvious, he went through the long, stressful and expensive process of gathering formal evidence to support his diagnosis and mobility needs. He eventually received a new plan; all his requests for mobility assistance were declined.

Thus began the long and stressful process of appealing the decision which went all the way to the Administrative Reviews Tribunal and required direction, despite the clear and obvious need. The view of the NDIA was that the mobility issues relating to Ehlers-Danlos Syndrome were not permanent and treatment for them had not been properly explored.

Suffice to say that the whole process that lasted almost two years, led to Mr Lang Howson contemplating suicide. In his own words, “For the first time in my life, I had thoughts about taking my own life. I started thinking that I hated myself and that my child deserved a better parent than me, and that I will never be able to have a fair go at life because I will always need to fight the NDIS for the things I need …”

I believe Mr Lang Howson applied for Freedom of Information and came across a document where an NDIA delegate actually recommended that the NDIA provide all the support that was requested. This was apparently overruled by the Technical Advisory body within the NDIA. In all, it took nearly two years of stress and unnecessary legal fees before the NDIA accepted that Ehlers-Danlos syndrome was indeed a disability, and funded support. But what of the human cost?

Deaf man Bruce Drabsch, 92, died at Westmead Hospital in February this year. On admission to the hospital his wife, who is also Deaf, repeatedly requested an Auslan interpreter. The hospital failed to provide one. This meant that Mr Drabsch and his Deaf wife remained uniformed and unable to contribute to care decisions in the final hours of his life.

According to ABC News, “When the 92-year-old Mr Drabsch, whose only language was Australian Sign Language (Auslan), arrived at the hospital, staff made the mistake of assuming there would be no way to communicate with him or his wife Margaret, who is also Deaf.” Let that sink in! The reality is, the hospital staff didn’t bother to try.

His wife requested an Auslan interpreter so that she could be informed and be involved in decisions about Mr Drabsch care. ABC news notes that other language interpreters are provided for non-English speaking patients. Such provision of interpreters is a “professional and ethical requirement.” In the case of Mr Drabsch, staff made the assumption that an “… Auslan interpreter would not be able to be sourced …” So, they did not bother to try and book one.

This meant that Mr Drabsch and his wife were:

1. Not able to fully comprehend what was happening, nor what was wrong.
2. Not able to be involved in care decisions, nor understand the care initiatives that were being implemented.

As a deaf person imagining this scene, I am not just angry, I am horrified. Just imagining the trauma that Mr Drabsch and his wife endured in the last moments of his life fills me with contempt. I actually find myself breathing harder just imagining it. What must it have been like for them? Mrs Drabsch said, “You could see him gasping for air, they were putting needles in him, I don’t know what was happening,”

Imagine the utter horror. You can see your life-long spouse struggling for breath. You can see the nurses and doctors frantically trying to save him but you have no idea what is going on. What ensued is that Mr Drabsch died.

While this trauma was unfolding, the couple’s hearing daughter was rushing to the hospital. She had been informed to come to the hospital six hours after Mr Drabsch had been admitted. She received a phone call enroute informing her that her father had died, but that’s not all….. “Mr Drabsch’s daughter Melinda Dagger, who was travelling to the hospital, was phoned by a doctor and asked to inform her mother her husband had died, because there was no-one to communicate with her.”

I cannot imagine the turmoil of emotions the daughter would have been experiencing upon hearing that her father had died. On top of those emotions, she was then asked to tell her mother that her mother’s life-long partner had passed away. This because the hospital staff were unable to effectively communicate with her mother. How can this be allowed to happen?

Why am I telling these stories? I am telling these stories because every day, all over Australia people are experiencing barriers accessing supports and services that most Australians take for granted. Be it health, Centrelink, NDIS, counselling or simply trying to get a job, accessing these services and others can and often does lead to extreme anguish and trauma.

Tragically, as was the case with Mr Drabsch, it can lead to death. It was noted in the enquiry to his death that there were medical issues that could have been considered in his treatment but were not. You have to ask if these medical conditions might have been identified if the hospital staff had been able to properly communicate with Mr Drabsch and his wife. In the case of Mr Lang Howson, we can see that the experience can cause so much trauma that suicide is contemplated.

I see this through my work everyday. I’ve seen a deaf person waiting 15 hours for an ambulance because the ambulance service were unable to contact them directly. I’ve seen people struggling to understand correspondence that they have received from Centrelink because it is written in complex language. Unsurprisingly, Centrelink and the NDIS also call Deaf people on the phone even though their file says not to. The consequence of this is that many are unable to respond in the required time frame, this often leads to their benefits being cut.

Research shows that people who are deaf and people with disabilities have a higher rate of mental health issues than the general population. In fact some research indicates that the incidence is more than double that of the general populace. I have no doubt that much of this is because of the constant and every day stress of trying to access supports and services that most Australians take for granted.

I have to ask a simple question to the people that are tasked with designing and implementing these supports and services. In the design and implementation of these services, did you forget about me and millions of others like me all over Australia?

My condolences to Mr Drabsch’s family in this terribly sad time. To Mr Lang Howson I say – Hang around, the world is a better place with you in it.