The national Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability has released an issues paper on
Health care for people with cognitive disability, commenting
Health is a key area of inquiry for the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (the Royal Commission). People with disability may be subject to violence, abuse, neglect and exploitation in health settings, and the denial of the right to health care may also be a form of neglect.
The Royal Commission wants to understand the experiences of people with cognitive disability in accessing or receiving health care. People with cognitive disability include people with intellectual disability, autism, acquired brain injury or dementia. People with cognitive disability may experience poor health outcomes due to barriers in the health system. Research suggests that people with cognitive disability are more likely to suffer an avoidable death that could have been prevented through appropriate health care.
The purpose of this paper is to invite information and discussion from the public on the key issues regarding health care and services for people with cognitive disability that require exploration by the Royal Commission, as well as examples of good practice.
We understand that health care of people with cognitive disability is only one issue we need to consider. We invite your ideas on other matters related to health that we should be examining. Based on your feedback and our research, broader experiences of people with disability in the health system will be addressed in issues papers in 2020. ...
A human rights-based approach
Our terms of reference recognise that Australia has international obligations to take appropriate legislative, administrative and other measures to promote the human rights of people with disability. The right to health is provided for in the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and Article 25 recognises the right to the highest attainable standard of health, without discrimination on the basis of disability. The CRPD also provides obligations in respect of habilitation and rehabilitation in Article 26. Australia is also party to four other international human rights instruments which recognise the right to health.
The right to health does not simply mean the right to ‘be healthy’. Rather, the right to health contains both entitlements and freedoms.
Entitlements include the right to essential primary health care. Freedoms include the right to:
• non-discrimination
• control one's health and body, including sexual and reproductive freedom
• free and informed consent
• be free from non-consensual medical treatment and experimentation
• be free from torture or cruel, inhuman or degrading treatment or punishment.
The particular experience of people with cognitive disability was addressed by the United Nations Committee on the Rights of Persons with Disabilities (the UN Committee) in its recent Concluding Observations on the combined second and third periodic reports of Australia.
The UN Committee recommended that Australia adhere to Article 25 to ensure that
all persons with disabilities and children with disabilities have access to information, on an equal basis with others, and to affordable, accessible, quality and culturally-sensitive health services and equipment … with particular consideration for … persons with intellectual or psychosocial disabilities.
Why is the Royal Commission looking at health care for people with cognitive disability?
Health is critical to support the independence and inclusion of people with disability. It is an enabling right. If a person’s health needs are not met, then children and adults with disability may be unable to attend school, access employment opportunities or participate in society. However, research shows that, since the mid-1990s, there has been little progress to address the barriers faced by people with cognitive disability when accessing health care.
Health for First Nations people encompasses spiritual, cultural, emotional and social wellbeing. It recognises that belonging and deep connections to land, culture, spirituality, family, and community are important for wellbeing, and is influenced by past events. There is limited research on the multiple barriers to health care for First Nations people with cognitive disability, although research suggests that non-Indigenous Australians with disability receive services that First Nations people with disability do not. Culturally and linguistically diverse people with disability may also experience unique barriers in accessing health care. This requires further research and investigation.
Some issues and barriers
There are a range of issues and barriers that people with cognitive disability may experience with the health system, including mental health and dental and oral health. People with cognitive disability report that medical professionals often don’t take the time to explain health issues in accessible ways. This can make it difficult for people with cognitive disability to understand examinations, diagnosis and treatment options and may lead to these not being performed or being performed without informed consent.
Some other examples of barriers and issues are outlined below.
These barriers and issues may occur in all health care settings, including hospitals, general practitioner’s (GP) clinics, medical centres, community health centres and specialist or consultant offices.
• Barriers to health care for people with cognitive disability can include:
• communication and physical barriers
• cost and funding
• rural and remote access
• training of health and mental health professionals.
• Attitudes and assumptions, which may influence issues such as:
• diagnostic overshadowing – where a health professional attributes symptoms to a person’s disability rather than to a health issue
• delayed diagnoses/misdiagnoses
• prescribing practices, over-prescription, and restrictive practices
• lack of sexual and reproductive health care.
Since the National Disability Insurance Scheme began, participants, including people with cognitive disability, often report significant issues with the interaction between health systems and the NDIS.
Some issues include:
• gaps in funding
• gaps in supports, including support workers and communication supports
• lack of coordination between the health system and the NDIS
• inconsistent information
• delays in hospital discharge planning that mean people are ‘stuck’ in hospital.
The Royal Commission is also interested in hearing about other issues and barriers that people with cognitive disability experience in accessing or receiving health care.
Questions
Question 1:
What do you think about the quality of health care for people with cognitive disability?
Question 2:
A. If you are a person with cognitive disability, can you tell us about any problems you have had in getting health care?
B. Can you tell us about any barriers that people with cognitive disability have experienced in accessing health care?
Question 3:
A. If you are a person with cognitive disability, can you tell us about any problems you have had with the NDIS and getting health care?
B. Can you tell us about any problems that people with cognitive disability have had with the NDIS and accessing health care?
Question 4:
A. What do you think should be done to fix the problems people with cognitive disability have in getting health care?
B. How could the NDIS and health systems work better for people with cognitive disability?
Question 5:
Why do people with cognitive disability experience violence, abuse, neglect or exploitation in health care? What are the causes?
Question 6:
A. Is the violence, abuse, neglect or exploitation that people with cognitive disability experience, different in doctor’s or GP’s surgeries, medical centres, hospitals, specialists or consultants?
B. Is the violence, abuse, neglect or exploitation that people with cognitive disability experience, different in public, private or not-for-profit health care?
Question 7:
A. Are experiences of violence, abuse, neglect or exploitation in health care different for particular groups of people with cognitive disability?
B. Are experiences of violence, abuse, neglect or exploitation in health care different for First Nations and culturally and linguistically diverse people with cognitive disability?
C. How does a person’s gender, age, or cultural or sexual identity impact on people with cognitive disability getting health care?
Question 8:
A. What could prevent people with disability experiencing violence, abuse, neglect or exploitation in health care?
B. What would make a person with cognitive disability feel safe when getting health care?
C. Can you give us any examples?
Question 9:
A. What would stop a person with cognitive disability reporting violence, abuse, neglect or exploitation in health care?
B. What would make it easier for a person with cognitive disability to complain about violence, abuse, neglect or exploitation in health care?
Question 10:
Have we missed anything? What else should we know?
