Denver and Ida
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.
Ida is mother to Denver, who is in his late teens and has diagnoses of autism, cognitive disability, anxiety and epilepsy. She told the Royal Commission that Denver’s health care needs are not being met as they should be.
‘As Denver’s parents we have found it extremely difficult, stressful and expensive to provide suitable care for him … due to a lack of appropriate health care services.’
Denver has experienced barriers accessing a range of health care services, including blood tests, immunisations, dental care, general practice care, sexual and reproductive health, mental health and in accessing referrals.
Ida has outlined some of these barriers, which include a lack of medical knowledge in the community about autism, cognitive disability and anxiety, and few knowledgeable general practitioners who are willing to see children with these conditions for regular appointments. Regular appointments would help reduce anxiety by building rapport and cognitive understanding.
There are also few medical centres that are autism or anxiety friendly. Ida says they tend to have large noisy waiting rooms and long wait times even for prescheduled appointments, which increases agitation and anxiety before appointments. There is little or no option for home visits by medical professionals which could assist people with extreme anxiety or others who are unable to attend a regular medical clinic.
Ida says there is a lack of accessible resources that explain medical procedures, illnesses, sexual health and reproduction for children and adults with cognitive disability.
She also refers to the high out-of-pocket costs in accessing medical and dental care for someone like Denver, particularly when they have to be sedated in order to be treated.
Denver has faced similar issues in relation to hospital stays and visits to emergency departments, which have been ‘extremely distressing for all involved’. Denver and his family have experienced a lack of understanding and empathy from medical staff on such occasions.
One time, for example, after Denver had self-harmed in a manner requiring ambulance assistance and admission to the emergency department, Ida was met with ‘what do you want us to do? Are you here to relinquish him?’
‘Why is this appropriate to ask parents?’ Ida asks. ‘Do they treat all admissions in this way? We doubt it.’
All these factors have led to inadequate health care for Denver.
‘Trips to medical centres, specialists are done irregularly, often in emergency situations in times of severe illness, pain, dental trauma when there is no other option. He is not able to build a continuity of care with anyone, nor work on his fear of medical appointments, procedures and the changes happening within his maturing body.
‘We are deeply concerned for his future as an adult man without the advocacy support of his immediate family.’
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.