Submission 35 — Multicultural Disability Advocacy Association (MDAA) — Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability | External submission

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Multicultural Disability Advocacy

MDAA Association of NSW Inc

PO Box 884, GRANVILLE NSW 2142

10-12 Hutchinson St, Granville NSW 2142

Telephone: (02) 9891 6400 Toll Free: 1800 629 072 Facsimile: (02) 9897 9402 E-mail: mdaa@mdaa.org.au

ABN: 60 737 946 674

Submission to the Royal Commission into Violence, Abuse,

Neglect and Exploitation of People with Disability

Issues with Health Care Service Provision for People with

Disability from Culturally and Linguistically Diverse and Non

English-Speaking Backgrounds

26 November 2020

Contact for this submission:

Susan Laguna

Executive Director

Author: Nirosha Boaden

Disability Royal Commission Systemic

and Individual Advocate

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Background

The Multicultural Disability Advocacy Association of NSW (MDAA) is the peak body for

all people in NSW with disability, their families and carers, with a focus on those from a

culturally and linguistically diverse (CALD)/non-English speaking (NES) background with

disability. MDAA has more than twenty years of experience working with people with

disability and supports the active participation of its members and consumers in all aspects of

its work. The voices of our members and consumers informs MDAA’ s systemic advocacy

work thereby contributing to positive change for people with disability from CALD / NESB

in policies, procedures, practices and service delivery in government and non-government

agencies.

A consultation was held in March 2020 with people with disability from Culturally and

Linguistically Diverse/Non-English-Speaking Backgrounds (CALD/NESB) to discuss their

health care experiences. The participants for the consultation were aged between 36 to 58

with disability, including Intellectual and cognitive disabilities from various multicultural

backgrounds living in New South Wales (NSW). The participants demographics for the

consultation were:

36 years old female from India with vision impairment, has a mild intellectual

disability and also a physical disability. She lives with family and arrived in Australia in year

2000

47 years old female from China with Intellectual disability who speaks Cantonese and

lives independently

39 years old male from Vietnam with hearing and speech impairment, intellectual and

a physical disability. He speaks Vietnamese, lives with family and arrived in Australia in year

1985

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58 years old female from Indonesia with mental health issues and is the main carer for

her husband who has a chronic health condition as well as his son and daughter who have

autism. She speaks Bahasa Indonesian and arrived in Australia in year 1985

An elderly lady who is a carer of her brother with Down Syndrome. The family is

ethnic Chinese from Indonesia.

The Disability Royal Commission Issues Paper Health care for people with cognitive

disability (2019) echoes the similar issues mentioned by the participants below:

Freedoms: Lack of the right to control one’s health and body (CRPD)

Most of the people with disability from CALD/NESB that we support face barriers to

meaningful participation in their own healthcare and the right to control their own health

and body. Significantly, majority of the people with cognitive and intellectual disabilities

from CALD/NESB that we support experience multiple oppressions that do not allow

them to participate in the decisions made about them and their health, and undermine the

position that they are the experts on their own lives.

For example, in the context of the NDIS a consumer with intellectual disability stated that:

“I was told that I look ok and I do not need NDIS even I told them I have intellectual

disability and need support understanding things.“ While another female consumer spoke more broadly about her interactions with accessing health services stating that “[theyJ treat people with disability as ifthey do not understand, oftentimes asking carers to accompany them and attend appointments with them and [theyJdo not talk to me but to

my Dad as he is my carer. “

Both statements highlight that the provision of health services lack explicit strategies to

empower people with a disability to participate in their own healthcare, and the oppression

of their voices through disablism. Disablism refers to the systemic discrimination and

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prejudice against people with disabilities and the combination of social forces, cultural

values, and personal prejudices which marginalises people with disabilities, portrays them

negatively and thus continues to oppress them (Thompson, 2006). It is evident that the

consumers we support experience barriers and the right to control one’s health and body

when receiving health services due to a culture that is underpinned by disablism, rather

than an understanding of anti-disablist practice and disability-awareness. As one consumer

clearly articulates the issue “doctors and nurses have no awareness ofways to support

people with disability appropriately or understand disability“.

MDAA recommends that the provision of healthcare services be underpinned by the social model of disability, cultural sensitivity, and trauma-informed

practice:

A shift from the dominant disablist ideology underpinning the medical model is needed, as

this continues to stereotype people with disability as passive, dependent and infantile.

Especially regarding women with disability, as the women we support from CALD/NESB

experience multiple forms of discrimination and oppression when accessing health care.

The implications of dependency and infancy are exacerbated for women with disabilities

from CALD/NESB because of the important role gender plays in determining whether

they are expected or encouraged to participate in the own healthcare or in some instances,

even allowed. Some of the women we support have experienced forced and early

marriage, trafficking, and slavery and therefore are not aware of their right to control one’s

own health and body. In majority of CALD/NESB societies women continue to be

encouraged to play a more dependent role in society than men and women with disabilities

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continue to face barriers to control over their own health and body due to these

interlocking and mutually reinforced oppressions in Australian society (Thompson, 2006).

MDAA recommends the need for disability-awareness training to be compulsory for all hospital staff:

While New South Wales Health Disability Inclusion Action Plan (2016-2019) Focus Area

1 aims to promote positive attitudes and behaviours regarding disability inclusion, the

online training courses for NSW Health Staff must include disability as compulsory

learning for all current and new onboarding staff

Entitlements: Lack of the right to health without discrimination on the

grounds of race, ethnicity, age, disability, or any other status (CRPD)

Many of the people with disability from CALD/NESB that we support face barriers and

issues that influence their right to health free from discrimination on the grounds of race,

ethnicity, age, disability, and other statuses. Most notedly, the people we support with

intellectual disability, and/or psychiatric disability who are over 35 years of age

experience discrimination on the basis of their disability as they are not being provided

easy-read or plain language information about their health and treatment. A consumer

states that: “once a psychologist said she cannot provide counselling for a person with

intellectual disability because he would not understand “

In addition, those from CALD/NESB are not being provided health information in their

own language or being explained by a CALD specific health worker the procedures

involved in health testing e.g. COVID, bowel cancer screening, cervical cancer. During

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the consultation a consumer expressed the difficulty in understanding medical terminology: “[theyJjust gave injections or medications without explaining what it is for

or ifthey tell the patient they do not make it simple for patients to understand or when

giving diagnoses ofillness or preparing for operation language is hard to understandfor

ordinary people. “

MDAA recommends that medical professionals take the time to explain health issues and treatment in a variety of accessible ways: For people with

intellectual and cognitive disabilities health information and medical service delivery

should be provided in easy-read formats, plain English, and incorporate symbols and

visuals like the Picture Exchange Communication System in hospitals and community

treatment settings to support their communication. For people with disabilities from

CALD/NESB health information and medical service delivery should be provided in a

range of languages using both written text and visuals. There should also be the option to

use an interpreter when explaining diagnosis and treatment, and when making decisions

about their health. People with disability from CALD/NESB are entitled to the right to a

system of health protection that provides equality of opportunity to enjoy the highest

attainable standard of health free from discrimination.

Entitlements: Lack of the right to health facilities, goods and services that are

Accessible, Acceptable and Quality

During the consultation, other key issues for people with disability included that the health

services provided to them were not culturally acceptable or accessible, sensitive to gender

or person-centered. A female consumer stated that: “staffshow no respect, patients are

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considered beds and not people and they address patients by bed numbers rather than

names. They have no respectfor privacy, the nurse insisted on keeping the door open

while I was in the toilet“. Acceptability requires that all consumers have the right to

treatment that respects their dignity and privacy and that where this is compromised

because of essential treatment, that they should have processes to ensure that they are

treated respectfully and that full privacy is established as soon as practicable (The

Department of Health, 2010).

Another consumer gave an account of an admission in hospital where they were physically

unable to eat food or have bladder/bowel release without support, but were left to suffer

stating that “the food wasn ’t cut up even ifthe patient is visually impaired and another has

weak hand muscles; myfamily members translated basic requests for water, doing wee or

poo for a patient who does not speak English we were just ignored leaving the patient

suffering further“.

MDAA recommends that Local Health Districts provide culturally acceptable, accessible and quality health facilities, goods and services: For the

people we support with disability from CALD/NESB a key barrier to accessible,

acceptable and quality health care are the dominant cultural norms and values of western

medical models and disablist health systems in Australia. We ask that people with

disabilities from CALD/NESB not be excluded from the same mainstream health service

provision or be denied access to basic food, water, and toilet facilities because of their

disability or CALD/NESB. We ask that people be referred to by their name, as for many

people from CALD/NESB their name is of cultural significance and meaning, and by

doing so may break down barriers, facilitate engagement and health-seeking behaviours.

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MDAA recommends that person-centered approaches be implemented across all health service provision: to ensure all appropriate measures are taken to

ensure access for persons with disabilities to health services and health-related

rehabilitation.

Recommendations:
MDAA recommends that the provision of healthcare services be underpinned by the social model of disability, cultural sensitivity, and trauma-informed practice
MDAA recommends the needs for disability-awareness training to be compulsory for all hospital staff
MDAA recommends that medical professionals take the time to explain health issues and treatment in a variety of accessible ways
MDAA recommends that Local Health Districts provide culturally acceptable, accessible, and quality health facilities, goods, and services
MDAA recommends that hospitals aim to provide a person-centered service and have a checklist of basic needs of a patient with disability (e.g. interpreter; plain

English instructions; has vision impairment so large print required; communicates

with assistive technology eg. Ipad)

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Reference list

New South Wales Health Disability Inclusion Action Plan (2016-2019).

https://www.health.nsw.gov.au/disability/Pages/disability-action-plan-16-19 .aspx

The Department of Health (2010) Implementation guidelines for public mental health

services and private hospitals.

https://www l .health.gov .au/internet/main/publishing.nsf/Content/mental-pubs-i-public

The Disability Royal Commission (2019). Issues Paper: Health care for people with

cognitive disability. https://disability.royalcommission.gov.au/publications/health-care

peopl e-cogni ti ve-di sabili ty

Thompson, N. (2006). Anti-discriminatory practice (4th ed.). Palgrave Macmillan.