My husband and I had been married for 27 years when in 2014 he had a hang gliding accident which resulted in a catastrophic brain injury.
We have two daughters, one was 18 and other 20.
Our life was turned upside down.
The accident happened in Wellington NSW so he was airlifted to Liverpool hospital.
The injuries were so grave that the police had already commenced writing the coroner’s report.
I walked out the door in Newcastle and drove to Sydney. I did not return to Newcastle for three months.
There was no way I could leave him, so I looked for an apartment close to the hospital that I could rent.
He was in intensive care for 2 months.
I had worked for the same company for 32 years. They were extremely supportive and allowed me to stay with him and keep my job open.
It became obvious that My husband had a significant brain injury. He was starting to respond but as he had a breathing tube in his throat for the entire time he was in ICU, due to his many complicated injuries, no one was sure of the extent.
The plan was to move him into the brain injury unit at Liverpool.
I extended the lease on the apartment, and discussed with work what I would do next. the financial toll was huge.
I was told he would most likely be in the brain injury unit for 6-8 weeks as he was becoming more alert and they were just waiting for him to emerge from his Post Traumatic Amnesia ( PTA) so they could start therapies.
I arranged to return to work two days a week, and organised for his step mother to come from the Gold Coast to support him on the days I wasn’t there.
Unfortunately, my husband never emerged from PTA.
He remains in a state of confusion, unaware of time and place.
He remained in the Liverpool Brain Injury unit for 18 months.
During this time, he was given intensive therapies to improve his physical injuries but to also try to establish routine around his activities of daily living ( ADL’s).
He has been amazing. With prompting and re orientation constantly he can do everything. He is physically able, but has significant and unique cognitive impairments.
His memory lasts for around 2-5 minutes. He has not been able to create any new memories since the accident in November 2014.
Additionally, he has virtually no memories of the last 35 years.
He knows I am his wife, but he cannot tell me one thing that we have done together in our life.
He knows his children, but without prompting him he won’t ask about them.
If he sees them, he knows who they are.
He cannot tell you one thing that he has ever done with them.
He knows his friends by name and recognises them but he cannot tell you how he knows them or anything they have done together.
He lives in a constant state of confusion. Can you imagine what it would be like to not be able to remember anything from moment to moment, not be able to recall almost anything from your last 35 years and have no concept of what day or time it is, where you are and why you are there.
It requires all of his limited brain capacity to try to reconcile with this and as a result he experiences extreme fatigue which then results in daily outbursts and periods of agitation.
In late 2015 we started to look at where we could bring my husband home to in Newcastle and that is when I first became aware of the NDIA.
I called every option there was for housing opportunities for him, but every company said they didn’t have a place for him.
They told me he would not be suitable for a group home due to his behaviours and severe brain injury. Time and time again I was told a nursing home was the only option.
It became obvious that he would require 1:1 support in a model that would keep him safe as well.
Around that time, I found the Summer Foundation Hunter Housing project and applied, explaining that the only other option for him was a locked dementia ward of a nursing home( if they would take him).
He had progressed to doing everything for himself with continual prompting and he was physically able..
He was enjoying outings, and he was cooking at the hospital and also attending wood working classes.
We knew that he did not belong in a nursing home.
He has a Brain injury, not degenerative dementia!
My main priority and goal for my husband is for him to be safe.
Twice, while he was in Liverpool’s locked brain injury unit he managed to walk out when a relief nurse thought he was a visitor. He was not trying to escape, he was just lost. Luckily on both occasions he was found quickly.
When searching for the correct place for him, I knew it needed to be a place where routine could be established and maintained and he could remain safe.
It is critical to his wellbeing to have routine and consistency.
Summer Housing explained that the NDIA had to give the final approval for him to be able to have a place in the Housing Project at Belmont.
A meeting was had between the Summer Foundation and NDIS and he was offered a place.
I was relieved.
My husband would be reaching his NDIS plans goals ” living in the least restrictive environment that meets his safety needs”
Our children would still able to visit him in a warm, loving environment and he would have the safety of 1:1 support, with a 24/7 back up person on site for emergencies.
As it turned out, he did start to become extremely agitated after living in the apartment for 4 months and that 24/7 back up was vital in ensuring his safety on many occasions.
He ended up in hospital for 7 weeks, but then was transitioned back to Belmont successfully with the blessing of all his specialists, knowing he was returning to this safe environment.
At that time, increased security measures were introduced which were part of the technology design model in the apartments.
Having this technology has enabled him to reduce his active care to overnight inactive support.
In October last year, after living in the apartment for 15 months, I was notified by NDIS that He may not be eligible for SDA funding which would then mean he would have to leave. This was the first time I even had an inkling that he may not be staying in the specialist apartment.
Living here has enabled a reduction in supports that would not happen in any other environment.
He is building a bench seat at the moment, he assists in preparing his meals, goes out walking every day, rides his bike and enjoys visits from family.
He lives moment to moment but enough moments and you have a life!
Before the NDIA and SDA he would have no other option but to be in a locked environment.
The NDIA has enabled our whole family to have a life, but this has only worked because of this specialist accommodation.
The uncertainty our family has had to endure since October 2017 when we were told he may not be eligible for SDA has caused undue stress.
At the official opening of the Hunter housing project Stephanie Gunn welcomed the innovations and tenants in this project. She was there to represent the CEO of the NDIS and her words were, to quote “real inclusion starts in a safe affordable place to live”
There was no time where I thought that the NDIS would decide that he was not the right person for this housing permanently. We were welcomed at that opening by the representative of the CEO for NDIA.
It took 6 months for the NDIS to finally make a decision on 20th March 2018. The decision was no SDA.
It was even more unacceptable to find out that the documentation used was mostly irrelevant when trying to determine SDA.
When making a decision like this, the NDIS should make the time to ask for appropriate documentation.
At no time was I contacted to ask questions or to ask for appropriate information. At no time were any of my husbands extensive specialist team contacted to discuss his extremely complex needs.
People with a disability and their families have a right to a certain future.
We are now living from moment to moment again, like when he was in Intensive Care. Not knowing what tomorrow will bring.
We have been told by the Summer Housing, if he does not receive the SDA funding for High Physical Support he will not be able to remain at Belmont.
Unfortunately, as confirmed by the specialist letters supporting my husbands SDA appeal, this will mean one of two things, a locked institution or NDIS funding for two support workers, which will cost far more than the propsed SDA funding.
The future and wellbeing of not only my husband , but myself and our two daughters has been placed in jeopardy by this uncertainty and lack of understanding and appropriate investigation of this situation by the NDIS.
There is absolutely no timeframe for the NDIS to address the appeal I have written, so we live in limbo at the mercy of their decision.
The uncertainty of SDA funding for someone who really requires this, has in turn made companies like Summer Housing put their housing projects on hold.
My main issues:
SDA is open to interpretation and uncertainty
Proper investigation of the individual participant must be conducted before a decision can be made.
Prompt decision making for the participant( we are still unsure what is happening with my husband and it has now been 9 months) we are very fortunate that Summer Housing are prepared to allow us to stay until the appeal decision is final.
Prompt desicion making so that providers will have confidence in moving forward with their building projects. As you know, it takes a long time to build these apartments .
Transparency in the decision making again to build confidence in future providers.
I have discussed this with our local member, Tim Conroy, and he has said that local builders are putting their projects on hold due to the uncertainty of NDIS participants being granted SDA.
There seems to be confusion about participants who have extremely impaired cognitive functioning with few physical impairments and where they fit in the SDA criteria.
Clear understanding of whether SDA is granted for the lifetime of a participant who has shown that they have reached their best level of independane.