Amar and Usman
Content Warning: These stories are about violence, abuse, neglect and exploitation and may include references to suicide or self-harming behaviours. They may contain graphic descriptions and strong language and may be distressing. Some narratives may be about First Nations people who have passed away. If you need support, please see Contact & support.
Amar is in his mid-teens and has cerebral palsy and epilepsy. He uses a wheelchair and can’t sit upright or hold things in his hands. He has reduced vision and is unable to feed himself or speak.
His father, Usman, told the Royal Commission that Amar likes swimming pools and music.
‘[Amar] is a happy boy who likes to socialise … [He] loves when his brothers come to visit him during the school holidays, where they take trips to the beach and park.’
Usman’s wife, when she was pregnant with Amar, became worried because the baby wasn’t moving much.
‘We were reassured throughout her pregnancy and ongoing check-up that there was nothing wrong with our baby.’
Amar began having seizures a few days after coming home. His parents returned to hospital.
‘The doctors did not believe us and were just about to discharge him and [Amar] had [a] major seizure.’
Usman said his son was diagnosed with cerebral palsy and lissencephaly, a rare condition involving the brain’s development.
In the first seven years of his life, Amar’s parents became ‘exhausted and frustrated’ with the many dashes to hospital to treat seizures and chest infections.
Amar is fed through a tube in his stomach. Usman found a special diet that helped control the seizures, but Amar still needed round-the-clock care.
When Usman approached the state government for help, it agreed to two hours care a day and respite care several days a month. It wasn’t enough.
‘Drained and completely exhausted’, Usman’s wife asked the government to place their son in full-time residential care. The government told her ‘that such a place did not exist that met [Amar’s] complex needs’.
‘My wife was extremely stressed, the emotion was extreme. She lost all hope in [the] system due [to Amar] being misdiagnosis during pregnancy, lack of essential services, financial issues, 24/7 high need complex care, sleepless nights plus studying and working to support family, and lack of suitable transport for [Amar] which disconnected us from family and friends.’
She left about five years ago, taking Amar’s siblings and leaving Amar with Usman.
‘I’m altogether physically, emotionally, and mentally drained by providing long-term care of [Amar], which has had a profound effect on my health and wellbeing.’
Usman said he became ‘depressed to a point of having suicide thoughts’.
About three years ago, Usman applied for an NDIS plan for Amar. It took two years and ‘endless reviews’ that were ‘mentally, emotionally exhausting’ before the NDIS approved Amar’s support plan. Amar now receives 24-hour-a-day care.
‘I have dedicated [my life to] ensuring he has a good quality of life with all his needs met. “I am a man fighting the system, I am doing it all for my son,” I tell him every day. “I am going to fight for you.”’
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.