The Disability Royal Commission continued its Sydney hearings last week into how people with an intellectual disability experience the health care system.
The Commission heard directly from experts, medical practitioners, Government and people with a cognitive disability about their experiences in the Australian health system.
Difficulties accessing health services
On the fifth day of hearings, the Commission heard from Sabrina Monaghan who is a Registered Nurse (RN) and whose son, referred to as AAL, has been diagnosed with autism.
Ms Monaghan says that she knew very little about autism and that it was left to her to do the research when her son was diagnosed.
AAL’s autism has made it difficult to access health services like dental care. Ms Monaghan says she is “consumed with anger” that her son has not had timely access to dental and health care needs.
“Organisations can write glossy statements and protocols, guidelines, and say they are meeting all legislative framework for equal access, but in practice, this is not happening, especially for people with complex behaviour issues,” she adds.
Ms Monaghan says it is not just the health services that she has had incidents with.
“In every sector we’ve come across, whether it’s education, community service, there have been episodes and serious episodes of neglect that have prompted me to actually have to write letters to Ministers, [and to] to the Disability Service Commission.”
Poor oral hygiene a “sign of poor maintenance, preventative care and home care”
Dr Richard Zylan and Nathan Despott provided a joint submission on behalf of the Disability and Oral Health collaboration, Your Dental Health Project, the Australasian Academy of Paediatric Dentistry, and the Australian Society of Special Care in Dentistry.
Dr Zylan told the Commission that maintaining oral health for those with a disability can be difficult.
“There’s much more issues of dysphagia problems with eating. There’s also more tooth-wear, erosion and just difficulties around getting the daily care,” Dr Zylan adds.
Mr Despott provided information to the Commission about the barriers that people with intellectual disability may face when accessing dental care.
“…issues are less to do with, you know, physically accessing the dental clinic, which is still a barrier, but in our experience, it’s more to do with the planning and procedural gaps and the poor interface between the disability sector and the dental sector.
“Poor oral health is not because someone has an intellectual disability. Instead, it is a “sign of poor maintenance, preventative care and home care”, says Mr Despott.
“What’s the point of talking to you when we know you’re not listening?”
Addressing the challenges of Indigenous people with disability, Narelle Reynolds, a First Nations Wiradjuri woman, spoke to the Commission about finding care for her sons who have Fragile X syndrome and her experience as an advocate.
Ms Reynolds told the Commission about the difficulties that a lot of Aboriginal people with a disability experience, explaining that a lot of them don’t remain connected with or continue to seek services from the National Disability Insurance Scheme (NDIS).
“We just don’t talk, because what’s the point of talking to you when we know you’re not listening?
“There’s never been anything in [the] NDIS to support access for Aboriginal people.”
Institutional prejudice sits within the health care system
Dr Scott Avery from the First Peoples Disability Network told the Commission that Aboriginal people with a disability are “double-disadvantaged” when it comes to accessing services.
He says, “You can experience racism, you can experience ableism, but there are some times when those two come together.”
Not receiving the appropriate care and facing discrimination has had severe consequences. Dr Avery used an example of an Aboriginal man living “not far from here.”
“[The man] has a cognitive impairment. And his public presentation of his disability, coupled with the negative stereotypes about Aboriginal people and drinking, he gets passed off as drunk. So he can’t go shopping. He can’t catch public transport.
“Now, one of those things mightn’t be enough. But you put those two things together, his life is basically taken away from him. He’s unable to participate.”
Dr Avery says that there is “…institutional prejudice that sits within the health care system, in which highly qualified health care practitioners can just pass people off with need as being drunk or faking it.”
“The voice of people just isn’t heard”
The health hearings entered their sixth day on 25 February. The Commission heard from Jaqueline Mills who spoke about her experiences accessing health care for her sons and her experience as an advocate.
She told the Commission about issues for people with complex communication needs, such as her son, when accessing health care. She also told the Commission how they had developed a way for him to indicate pain and discomfort using an iPad.
Ms Mills says, “I believe that systems whilst they can do things that are really damaging to people, I don’t believe that the people in those systems do want to do that. I really believe this is around communication and understanding. And very often, the voice of people just isn’t heard.”
The Commission next heard from Senior advocate Jim Simpson from the New South Wales (NSW) Council for Intellectual Disability (CID) who labelled the current system a “national disgrace”.
Mr Simpson told the Commission that research since the mid-1990s shows there has been a lack of adequate diagnosis of health conditions in people with intellectual disability and that changes have taken too long.
Hospitals not safe for people with intellectual disabilities
On day seven, 26 February, Witness AAJ, referred to as Dr J spoke to the Commission. Dr J is a palliative care specialist and told the Commission that people with intellectual disability were not getting the care they need.
Dr J says, “they’re referred to me before they’ve been offered any treatment for what is usually cancer. And this has greatly concerned me…We obviously may have to modify that treatment, but it’s often not even being considered.
“And if you’ve got someone with an intellectual disability, well, then, they obviously don’t realise that’s the case. Or if they have a parent or guardian, they may have been told, “Well, you know, this is too much for them.”
Dr J also told the Commission that in terms of hospitalisation, there are virtually no services to support acutely unwell children, adolescents and adults with severe autism.
Dr J is worried about the future of his son, who has autism, and of the health care system.
He told the Commission “I worry for the future of my son and for other people with disabilities. I don’t feel hospitals are safe for people with intellectual disabilities, especially when they’re non-verbal.
“Patients with an intellectual disability face a profound struggle within the health care system from the moment they are born to the moment they die” he added.
“There’s no doubt that we could do better”
The Commonwealth Department of Health, NSW Health, and the NDIS Quality and Safeguards Commission responded to issues raised during the hearing on day eight, 27 February.
The Commission heard from the Deputy Secretary of NSW Health, Dr Nigel Lyons, who talked about the agency’s current rollout of specialised intellectual disability health services.
Dr Lyons outlined a range of other initiatives undertaken by NSW Health but acknowledged that NSW Health could do better.
Representatives from the Commonwealth Department of Health provided the Commission information about future plans and the creation of the National Roadmap for Improving the Health of Australians with Intellectual Disability.
The Commission also heard from Chief Executive of the NDIS Quality and Safeguards Commission, Graeme Head.
Mr Head told the Commission that deaths of people with a disability that occurred in connection with the provision of services supplied by the NDIS must be reported to the Safeguards Commission. The Safeguards Commission then has a range of actions it can consider taking.
He also told the Commission that they can only focus on the failings in NDIS services, not on the failings of the health service.
“No one had listened or believed me”
The final day of the current hearing into health, 28 February, first heard from Jo Abi who told the Commission about accessing and receiving mental health care for one of her sons and accessing general health care.
Both of Ms Abi’s children, Philip and Giovanni, have been diagnosed with autism. She told the Commission that the struggle to have her children diagnosed was difficult.
“No one had listened or believed me. And I didn’t want to say, “I told you so.” I just felt so misunderstood and just, sort of, so sad for my son…having the assessment was amazing. I wish I had done it earlier.
Ms Abi also told the Commission about her eldest sons struggles with mental health, she showed the Commission a drawing of her and her son “in a bubble screaming and no one can hear us.”
She also mentioned her issues with accessing the NDIS and finding someone who will work with her sons and provide them the support they need.
The Royal Commission’s last witness was Robert Strike AM, who co-founded Self Advocacy Sydney and lives with an intellectual disability.
Mr Strike told the Commission that there are a number of things that can help someone with understanding, these include not being rushed and not having words put in their mouth. He also told the Commission of the importance of advocacy.
Mr Strike also provided more information about the issues faced when accessing the health care system.
Chair of the Commission, the Honourable Ronald Sackville AO QC closed the proceeding saying that the nine days of hearing in Homebush have been “very significant” and reiterated the importance of exposing neglect and abuse in all settings, including the health system.
The next series of hearings will take place 24 – 27 March 2020 in Brisbane and focus on education.