Response 177369681

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Tell us about you

1. What is your name? (Optional)

Name
Aged and Disability Advocacy Australia

3. Are you providing comments on behalf of an organisation? If so, please provide your organisation's name.

Organisation's name
Aged and Disability Advocacy (ADA) Australia

4. Do you give consent for your submission to be published in whole or in part?

Please select one item
Ticked Yes
No

5. Do you give consent for your name to be published?

Please select one item
Ticked Yes
No

6. What role best describes you? Please select all that apply.

Please select all that apply
Aged care consumer receiving residential care
Aged care consumer receiving care at home
Family, representative and/or carer of consumer receiving residential care
Family, representative and/or carer of consumer receiving care at home
Aged care service provider - care at home
Aged care service provider - residential
Aged care worker/professional
Ticked Advocacy service
Peak body - consumers
Peak body - other
Other - please specify below

7. Where do you live, or where does your organisation operate? Please select all that apply.

Please select all that apply
NSW
VIC
Ticked QLD
WA
SA
TAS
ACT
NT
Australia-wide

8. What is your location, or the location where your organisation operates? Please select all that apply.

Please select all that apply
Ticked Metropolitan
Ticked Regional
Ticked Rural / Remote

10. If you are commenting on behalf of an organisation, does your organisation provide support or services to any of the following groups? Please select all that apply.

Please select all that apply
Ticked People from Aboriginal and/or Torres Strait Islander communities
Ticked People from culturally and linguistically diverse (CALD) backgrounds
Ticked People who live in rural or remote areas
Ticked People who are financially or socially disadvantaged
Ticked People who are veterans of the Australian Defence Force or an allied defence force including the spouse, widow or widower of a veteran
Ticked People who are homeless, or at risk of homelessness
Ticked People who are care leavers (which includes Forgotten Australians, Former Child Migrants and Stolen Generations)
Ticked Parents separated from their children by forced adoption or removal
Ticked People from lesbian, gay, bisexual, trans/transgender and intersex (LGBTI) communities
Ticked People living with dementia

General comments about the draft Charter

12. Does the Charter cover what you think is important?

Please select one item
Yes
Ticked No
If no, please specify
No.
ADA Australia’s advocates refer to the current Charters of Care Recipients Rights and Responsibilities (Residential and Home Care) every day. It is one of the key tools used to empower consumers and hold service providers accountable. The importance of the Charters as an advocacy tool has become increasingly important, especially with other useful resources such the Aged Care Guide to the Law and detailed and prescriptive Program Guidelines removed and replaced with watered down versions that are open to interpretation.

The current Charters offer consumers in depth information about their rights and describe what they should expect from their aged care service. The current Charters also provides advice on some of the most common concerns raised by consumers.
ADA Australia notes that advocates frequently refer to the following rights when supporting residential care consumers.

ADA Australia suggests that these rights are not adequately addressed in the draft Charter.
o To live in a safe, secure and homelike environment, and to move freely both within and outside the residential care service without undue restriction.

Referred to in cases where the service provider will not permit residents to leave the facility or to enter into common spaces within the facility. It is also often referred to when supporting clients using motorised scooters.

o To accept personal responsibility for his own actions and choices, even though these may involve an element of risk, because the care recipient has the right to accept risk and not have the risk used as grounds for preventing and restricting his or her actions and choices.

This principle is often linked to the right to move freely within and outside the residential care service. Advocates are regularly supporting people to exercise their right to take risk and leave the facility and visit friends and family or engage in activities of their choice. The right to take risk is also often referred to in cases where the client wishes to shower or toilet independently.

ADA Australia has even been involved in a case where a resident asked to be showered daily instead of only 3 days a week. Staff shortages was clearly the underlying issue here, but the service provider cited risk to skin integrity as the reason they could not support a daily shower. Advocates were successful in promoting the clients right to risk their skin integrity by taking a daily shower.

o To have access to advocates and other avenues of address.

The removal of any mention of advocate/advocacy in the Charter diminishes the importance and value of this vital consumer support.

o Select and maintain social and personal relationships with anyone else without fear, criticism or restriction.

Advocates regularly hear that residential care providers are placing limitations on who/how often the resident can see people whom they choose to associate, and we would like to see this right preserved.

o to be free from reprisal, or well-founded fear of reprisal, in any form for taking action to enforce his or her rights’

Given the level of fear that many service users, especially those in residential care have about engaging the services of an advocate, somewhere in the Charter it should talk about this ‘elephant in the room’ i.e. the almost universal fear that older people have about the potential consequences of speaking up about concerns they have with their care and when things aren’t right.

The Charter of Care Recipients Rights and Responsibilities – Home Care provide detailed information about what consumers should expect with regards to care planning, choice and flexibility, individualised budgets, invoices, fees etc. The Draft Charter of Aged Care Rights does not provide this level of detail. In ADA Australia’s experience, Home Care Package Consumers and their representatives seek this level of detail. It is difficult for them to find this information anywhere else.

Home Care Package Consumers need access to easy to understand, independent and accessible information on topics such as care planning, choice and flexibility, individualised budgets, invoices, fees. This information needs to empower consumers with strong links to the legislation, otherwise they will have limited traction when trying to engage and negotiate with service providers.

13. Does the introduction/preamble require clarification or any further information?

Please select one item
Ticked Yes
No
If yes, please provide details
Yes. The introduction/preamble requires further clarification.

14. Should the Charter be phrased in the first person, 'I have the right to' or 'you have the right to'?

Please select one item
I have the right to
You have the right to
Ticked Comfortable with either

15. Are the rights in the draft Charter easy to understand?

Please select one item
Yes
Ticked No
If no, please suggest alternative wording
ADA Australia is disappointed to see the Charter reduced to such a basic level. The generic nature of Draft Charter leaves many important principles open to interpretation. ADA Australia is concerned that aged care rights are being weakened, at a time when they should be strengthened.

ADA Australia suggests that the draft Charter underestimates the level of detail sought from aged care consumers and their representatives.

The current Charters provide consumers and their representatives with in depth information about their rights and what they should expect from their aged care service. The current Charters also provides advice on some of the most common concerns raised by consumers.

The level of detail provided in the current Charters is not offered to consumers in an easy to access and understand format anywhere else?

Consumers and their representatives seek this level of detail and reassurance when they have questions and concerns about their care.

16. Would you add any additional rights to the Charter?

Please select one item
Ticked Yes
No
If so, please provide details
ADAA would like to see the Draft Charter include the following elements from the current Charter of Care Recipients Rights and Responsibilities- Residential Care:

• To accept personal responsibility for his own actions and choices, even though these may involve an element of risk, because the care recipient has the right to accept risk and not have the risk used as grounds for preventing and restricting his or her actions and choices.
• To have access to advocates and other avenues of address.
• Select and maintain social and personal relationships with anyone else without fear, criticism or restriction.
• to be free from reprisal, or well-founded fear of reprisal, in any form for taking action to enforce his or her rights’
• To live in a safe, secure and homelike environment, and to move freely both within and outside the residential care service without undue restriction.

ADA Australia would like to see the Draft Charter include the following elements from the current Charter of Care Recipients Rights and Responsibilities- Home Care

• (3A) Each care recipient has the following rights:
(a) to receive an individualised budget for the care and services to be provided
(b) to have his or her individualised budget reviewed and, if necessary, revised if:
(i) the care and services to be provided, or the costs of providing the care and services, change; or
(ii) he or she requests the approved provider to review and, if necessary, revise the individualised budget
(c) to receive a monthly statement of the funds available and the expenditure in respect of the care and services provided during the month

• (7) Each care recipient has the following rights:
(a) to have his or her fees determined in a way that is transparent, accessible and fair
(b) to receive invoices that are clear and in a format that is understandable
(c) to have his or her fees reviewed periodically and on request when there are changes to his or her financial circumstances
(d) not to be denied care and services because of his or her inability to pay a fee for reasons beyond his or her control.

ADA Australia also suggests the Draft Charter reconsider including reference to Care Recipient Responsibilities. ADA Australia advocates often refer to Care Recipient Responsibilities in cases where the care recipient’s security of tenure is at risk, when a Home Care Package provider deems the clients home to be unsafe for workers, when a Home Care Package client wants the service provider to use a cleaning product or perform a cleaning task that is not compliant with workplace health and safety.

18. Would you change any rights in the draft Charter?

If yes, please specify which right and your suggested changes
ADA Australia suggests the following changes:

o d) maintain my independence

Suggested edit: ‘maintain my independence without undue restriction’.

o g) maintain control over, and continue to make decisions about, my care and personal and social life

Suggested edit: maintain control over, and continue to make decisions about, my care and personal and social life, without fear, criticism or restriction, even though my choices may involve an element of risk.

o i) choose to have another person speak on my behalf

Suggested edit: ‘choose to have another person, including an independent advocate, speak on my behalf’

o k) exercise my rights without it adversely affecting the way I am treated

Suggested edit: to be free from reprisal, or well-founded fear of reprisal, in any form for taking action to enforce his or her rights’



Your final say

19. How else could consumers be made aware of their rights under a single Charter?

Ways of raising consumer awareness
ADA Australia is a member of the Older Persons Advocacy Network (OPAN) and receives funding under the National Aged Care Advocacy Program (NACAP) to deliver advocacy, information and education services.

A key element of education services delivered under the NACAP is informing both consumers, representatives and aged care staff about the Charter of Rights and Responsibilities (Residential Care and Home Care).

Collectively OPAN Service Delivery Organisations deliver rights-based education to over 40,000 Australians a year.

ADA Australia suggests that the NACAP is best placed to provide ongoing rights-based education and awareness raising. The provision of rights-based information via the NACAP provides consumers with seamless access to advocacy support should an education trigger concerns about a consumers aged care rights not being respected