To Whom It May Concern:
My name is and I am writing to you as a mother of a child with level 2 Autism, OCD, and Tourette’s syndrome. I am a sister to a severely disabled brother with an intellectual disability, and Angelman syndrome. And I am also a sister in-law to my brother in-law with severe intellectual disability, ASD level 3, sever OCD, epilepsy and cerebral palsy. On top of that I work as a support worker.
Firstly, my child – 2 years ago, we were a family living in a crisis for 5 solid years. The first 2 years we had no diagnosis. We spent thousands of dollars that we didn’t have just trying to find answers for our son. At age 12 we finally could understand why he was so incredibly violent combined with repetitive ritual behaviours, he was diagnosed with ASD,OCD and Tourette syndrome, but just because we now had an understanding, it didn’t mean that his behaviours magically disappeared.
For 5 solid years we had police in our home 4 nights a week every week. We had hospital admissions fortnightly because the violent outbursts were so incredibly dangerous (Death defying) to the point of being strangled several times a day until you almost black out, broken bones, biting, punching, hair being pulled, my list is endless. Incredible amounts of damage to our home.
All of these behaviours led my son to respite stays in a family reunification program that was as a result from the social worker putting in a referral from the hospital to uniting communities. Although they tried their best to support us, we as a family were way beyond their skillset or capacity to support because they had no training in disability.
All of the outside of NDIS resources that we constantly hear about that don’t exist, what little resources there are, we’ve been there, done that after wait list after wait list, and none of them were suitable as they were not connected to disability in any way.
Our younger neurotypical son lived behind a locked door for 5 years. He was given his dinner through his bedroom window purely for his own safety. His brother was incredibly abusive and violent towards him. He couldn’t live the life of a normal child. He has been traumatized from the amount of violence that
he’s been exposed to. I was contacted by DCP several times along with the family domestic violence unit. They held grave concerns for our younger child.
We had absolutely no supports at this stage. We had no NDIS support and couldn’t manage his day-to-day behaviour. I had to quit work to literally fight him off every single day. My husband lost his job from lack of sleep having night after night of sever violent outbursts from our son. He could no longer focus on work knowing I was at home being beaten every single day by our son. After an extreme amount of hospital presentations, we finally got several diagnoses which allowed us onto the NDIS scheme.
From here we could access behavioural supports, this helped him learn the basic tools that he needed to cope when these big behaviours took over. OT to help manage his emotions and sever OCD. He got access to a support worker who transitioned him back into the community whilst navigating sever Tourette syndrome. His support worker also transitioned him back into school after missing 3.5 years. We were also supported under the ENU (Exceptional needs unit) who work together with the NDIS.
Our son went into voluntary out of home care so that we as a family could come out of living in a crisis and we could allow his NDIS supports to focus on building our sons capacity in managing his condition.
Without these supports, and the level of support that came with all of that, his capacity would not be where it is today.
He now has gone back to school, engages in the community and holds down a job at 17 years old and has rebuilt a friendship circle. His violent outbursts are nothing like they used to be and we’ve gone back to living together as a family. None of these things would have been possible without the NDIS supports and current plans in place to keep him stable.
My Brother: My Brother lives with Angelman syndrome. He is a SIL participant.
Angelman syndrome is a rare neuro-genetic disorder caused by the loss of function of the maternal UBE3A gene on chromosome 15. It is characterized by severe developmental delays, intellectual disability, lack of speech, balance and movement disorders, frequent seizures, and a uniquely happy demeanour with frequent laughing and excitability.
My Brother spent most of his childhood in foster care simply because the resources and supports that are now available through NDIS simply did not exist 40 years ago. My parents were past burn out, they were broken people who lost the capacity to care for my brother. He has unsustainable behaviours, unpredictable behaviours, does not sleep, has seizures, and needs 24/7 round the clock care. As a result from the lack of supports, my parents separated, our family did not make it, my brother ended up in the foster care system and was relinquished to the state and both my parents had several suicide attempts as a result from it.
Once he turned 18 he went into shared SIL accommodation. He was pushed from house to house to house. I can’t tell you how many shared accommodation houses he’s been in. The last one landed him in the royal Adelaide hospital for 3 moths shackled, yes, I said shackled to a bed by his legs and arms because the Drs and nurses are not trained in supporting this kind of disability and big behaviours of concern.
After living with another participant, he was smashed over the back of his head with a chair which led to a bunch of seizures. The company that he was with had relinquished their care to him as a last resort to get him independent accommodation before stepping back in to take over his care again once he got a house of his own. It’s mind blowing that they had to go to such extremes for the government to understand the severity of his situation and step in.
I’ve seen first-hand what a lack of supports can do to a family. Not to mention the people living with disability that don’t have a family or any informal supports. If you take away their NDIS supports where does that leave them?
Now on the scheme, my brother has the supports necessary to live his life to his full potential and we have been able to rebuild his trust and our relationships with him through the support of the team who care for him. And most importantly, he has BOTH of my parents back in his life when he nearly almost lost them to suicide because they are finally supported by his team of carers to sustain a safe relationship with him.
My Brother In-law – My Brother in-law lives with ASD, OCD and cerebral palsy. He also has a sever intellectual disability and epilepsy. He is a 50-year old man who thinks and behaves like a 6-year-old child and he is still in the full time care of my almost 80-year-old in-laws. My mother and father in-law rely on his funding so that they can continue their care for him. Without his NDIS
package they would most definitely be in carer burnout. Day ops is the only respite that they have. He would effectively cost the government more for if they were to relinquish their care due to burn out.
I would love to know what kind of lived experience in disability does any of the politicians have who are making all the rules and decisions? Have they worked on the floor in disability? Cared for every facit of someone’s life living with a disability? Watched a loved one suffer through disability?
Any-one can become disabled at any time, and anyone can become a full-time carer for a loved one… you just never know! And when it happens, you’ll want to have faith in our government that they wouldn’t leave you behind or discard you because your no longer worthy to live a quality of life.