Policy and Advocacy Survey

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Spinal Cord Injuries Australia (SCIA) Policy and Advocacy wants to know about your lived experiences of dealing with and responding to discrimination or barriers in any aspect of your life, including areas such as inaccessibility of shops, restaurants and buildings, transport services and related infrastructure etc. Hence, we are asking people with disability, their family, friends, and carers to complete this survey. We are really hoping you will share as much of your personal experience as possible, as this will give us material to help others.

The survey seeks to obtain an invaluable insight into common issues as well as specific individual encounters, what your needs are and what you have learnt along the way. The data will assist with the development and production of new individual, systemic and self-advocacy resources, and help SCIA Policy and Advocacy to improve current services.

Although this survey is anonymous, we ask for your permission to share your issues and experiences at the end of the survey. So if you would like to share them, to assist other people with disability to deal with their barriers and/or discrimination issues, please indicate this at the end of the survey. You might also like to give us your name and address so we can follow up with you. However, all the personal information will be de-identified. Also, SCIA complies with the Australian Privacy Principles set out in the SCIA Privacy Policy available on our website here.

It would be greatly appreciated if you would take the time to complete the survey which takes between 10-20minutes. You can answer as many questions as you like, but we are especially keen to hear your own tips and comments so that we can pass them on to others. This is your chance to share the stories, experiences, tips and ideas you wish everyone knew about, and pass on what you have learned.We really look forward to your answers.

Question Title

1. Are you a...?

Person with disability

Carer or family member of a person with disability

Other (please specify)

Question Title

2. In what areas of your life have you faced barriers, unequal or unfair treatment? (Choose as many as you like)

Healthcare or medical services

Disability or community support services

Employment or employment services

Accommodation/Housing

Home modifications and maintenance services and programs

Government services and programs

Education

Harassment or inappropriate behaviour

Equipment services or programs (eg. wheelchairs etc)

Access to premises

Entertainment, sport and recreation

Transport services

Please comment

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3. When you experience barriers, unequal, or unfair treatment, are you likely to speak up or take action?

	Usually do something	Sometimes do something	Occasionally do something	Rarely do anything	Never do anything	N/A
Healthcare or medical services	Healthcare or medical services Usually do something	Healthcare or medical services Sometimes do something	Healthcare or medical services Occasionally do something	Healthcare or medical services Rarely do anything	Healthcare or medical services Never do anything	Healthcare or medical services N/A
Disability or community support services	Disability or community support services Usually do something	Disability or community support services Sometimes do something	Disability or community support services Occasionally do something	Disability or community support services Rarely do anything	Disability or community support services Never do anything	Disability or community support services N/A
Employment and employment services	Employment and employment services Usually do something	Employment and employment services Sometimes do something	Employment and employment services Occasionally do something	Employment and employment services Rarely do anything	Employment and employment services Never do anything	Employment and employment services N/A
Accommodation/Housing	Accommodation/Housing Usually do something	Accommodation/Housing Sometimes do something	Accommodation/Housing Occasionally do something	Accommodation/Housing Rarely do anything	Accommodation/Housing Never do anything	Accommodation/Housing N/A
Home modifications and maintenance services and programs	Home modifications and maintenance services and programs Usually do something	Home modifications and maintenance services and programs Sometimes do something	Home modifications and maintenance services and programs Occasionally do something	Home modifications and maintenance services and programs Rarely do anything	Home modifications and maintenance services and programs Never do anything	Home modifications and maintenance services and programs N/A
Government services and programs	Government services and programs Usually do something	Government services and programs Sometimes do something	Government services and programs Occasionally do something	Government services and programs Rarely do anything	Government services and programs Never do anything	Government services and programs N/A
Education	Education Usually do something	Education Sometimes do something	Education Occasionally do something	Education Rarely do anything	Education Never do anything	Education N/A
Harassment or inappropriate behaviour	Harassment or inappropriate behaviour Usually do something	Harassment or inappropriate behaviour Sometimes do something	Harassment or inappropriate behaviour Occasionally do something	Harassment or inappropriate behaviour Rarely do anything	Harassment or inappropriate behaviour Never do anything	Harassment or inappropriate behaviour N/A
Equipment services and programs (eg. wheelchairs etc)	Equipment services and programs (eg. wheelchairs etc) Usually do something	Equipment services and programs (eg. wheelchairs etc) Sometimes do something	Equipment services and programs (eg. wheelchairs etc) Occasionally do something	Equipment services and programs (eg. wheelchairs etc) Rarely do anything	Equipment services and programs (eg. wheelchairs etc) Never do anything	Equipment services and programs (eg. wheelchairs etc) N/A
Access to premises	Access to premises Usually do something	Access to premises Sometimes do something	Access to premises Occasionally do something	Access to premises Rarely do anything	Access to premises Never do anything	Access to premises N/A
Entertainment, sport and recreation	Entertainment, sport and recreation Usually do something	Entertainment, sport and recreation Sometimes do something	Entertainment, sport and recreation Occasionally do something	Entertainment, sport and recreation Rarely do anything	Entertainment, sport and recreation Never do anything	Entertainment, sport and recreation N/A
Transport services	Transport services Usually do something	Transport services Sometimes do something	Transport services Occasionally do something	Transport services Rarely do anything	Transport services Never do anything	Transport services N/A

Please comment

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4. When you take action, how likely are you to do any of the following?

	Usual choice	Likely if I needed to	Sometimes I might	I am unlikely to	I probably never would
Confront or complain to the person directly responsible	Confront or complain to the person directly responsible Usual choice	Confront or complain to the person directly responsible Likely if I needed to	Confront or complain to the person directly responsible Sometimes I might	Confront or complain to the person directly responsible I am unlikely to	Confront or complain to the person directly responsible I probably never would
Complain to a manager or supervisor about the person responsible	Complain to a manager or supervisor about the person responsible Usual choice	Complain to a manager or supervisor about the person responsible Likely if I needed to	Complain to a manager or supervisor about the person responsible Sometimes I might	Complain to a manager or supervisor about the person responsible I am unlikely to	Complain to a manager or supervisor about the person responsible I probably never would
Use an organisation's or business' formal complaints process e.g. send email or letter	Use an organisation's or business' formal complaints process e.g. send email or letter Usual choice	Use an organisation's or business' formal complaints process e.g. send email or letter Likely if I needed to	Use an organisation's or business' formal complaints process e.g. send email or letter Sometimes I might	Use an organisation's or business' formal complaints process e.g. send email or letter I am unlikely to	Use an organisation's or business' formal complaints process e.g. send email or letter I probably never would
Seek assistance from an advocacy service	Seek assistance from an advocacy service Usual choice	Seek assistance from an advocacy service Likely if I needed to	Seek assistance from an advocacy service Sometimes I might	Seek assistance from an advocacy service I am unlikely to	Seek assistance from an advocacy service I probably never would
Complain to the Australian Human Rights Commission	Complain to the Australian Human Rights Commission Usual choice	Complain to the Australian Human Rights Commission Likely if I needed to	Complain to the Australian Human Rights Commission Sometimes I might	Complain to the Australian Human Rights Commission I am unlikely to	Complain to the Australian Human Rights Commission I probably never would
Seek legal advice	Seek legal advice Usual choice	Seek legal advice Likely if I needed to	Seek legal advice Sometimes I might	Seek legal advice I am unlikely to	Seek legal advice I probably never would
Complain to the relevant politician	Complain to the relevant politician Usual choice	Complain to the relevant politician Likely if I needed to	Complain to the relevant politician Sometimes I might	Complain to the relevant politician I am unlikely to	Complain to the relevant politician I probably never would
Contact the relevant ombudsman	Contact the relevant ombudsman Usual choice	Contact the relevant ombudsman Likely if I needed to	Contact the relevant ombudsman Sometimes I might	Contact the relevant ombudsman I am unlikely to	Contact the relevant ombudsman I probably never would
Use social media	Use social media Usual choice	Use social media Likely if I needed to	Use social media Sometimes I might	Use social media I am unlikely to	Use social media I probably never would
Contact the mainstream media, including newspapers, radio or television etc	Contact the mainstream media, including newspapers, radio or television etc Usual choice	Contact the mainstream media, including newspapers, radio or television etc Likely if I needed to	Contact the mainstream media, including newspapers, radio or television etc Sometimes I might	Contact the mainstream media, including newspapers, radio or television etc I am unlikely to	Contact the mainstream media, including newspapers, radio or television etc I probably never would

Please comment

Question Title

5. Have you decided not to do one of these things, or stopped doing it because it was too difficult?

	Yes, I thought it would be too difficult.	Yes, I started but found it too difficult.	No
Confront or complain to the person directly responsible	Confront or complain to the person directly responsible Yes, I thought it would be too difficult.	Confront or complain to the person directly responsible Yes, I started but found it too difficult.	Confront or complain to the person directly responsible No
Use an organisation's or business' formal complaints process	Use an organisation's or business' formal complaints process Yes, I thought it would be too difficult.	Use an organisation's or business' formal complaints process Yes, I started but found it too difficult.	Use an organisation's or business' formal complaints process No
Complain to a manager or supervisor about the person responsible	Complain to a manager or supervisor about the person responsible Yes, I thought it would be too difficult.	Complain to a manager or supervisor about the person responsible Yes, I started but found it too difficult.	Complain to a manager or supervisor about the person responsible No
Seek assistance from an advocacy service	Seek assistance from an advocacy service Yes, I thought it would be too difficult.	Seek assistance from an advocacy service Yes, I started but found it too difficult.	Seek assistance from an advocacy service No
Complain to the Australian Human Rights Commission	Complain to the Australian Human Rights Commission Yes, I thought it would be too difficult.	Complain to the Australian Human Rights Commission Yes, I started but found it too difficult.	Complain to the Australian Human Rights Commission No
Seek legal advice	Seek legal advice Yes, I thought it would be too difficult.	Seek legal advice Yes, I started but found it too difficult.	Seek legal advice No
Complain to the relevant politician	Complain to the relevant politician Yes, I thought it would be too difficult.	Complain to the relevant politician Yes, I started but found it too difficult.	Complain to the relevant politician No
Contact the relevant ombudsman	Contact the relevant ombudsman Yes, I thought it would be too difficult.	Contact the relevant ombudsman Yes, I started but found it too difficult.	Contact the relevant ombudsman No
Use social media	Use social media Yes, I thought it would be too difficult.	Use social media Yes, I started but found it too difficult.	Use social media No
Contact the mainstream media, including newspapers, radio and television etc	Contact the mainstream media, including newspapers, radio and television etc Yes, I thought it would be too difficult.	Contact the mainstream media, including newspapers, radio and television etc Yes, I started but found it too difficult.	Contact the mainstream media, including newspapers, radio and television etc No

Please comment

Question Title

6. What is important to you in deciding whether or not to do something about barriers or inequality?

	Very important	Important	Not very important	Not important at all
How good my advocacy or communication skills are	How good my advocacy or communication skills are Very important	How good my advocacy or communication skills are Important	How good my advocacy or communication skills are Not very important	How good my advocacy or communication skills are Not important at all
How much I know about my rights	How much I know about my rights Very important	How much I know about my rights Important	How much I know about my rights Not very important	How much I know about my rights Not important at all
How well I understand the process I need to use.	How well I understand the process I need to use. Very important	How well I understand the process I need to use. Important	How well I understand the process I need to use. Not very important	How well I understand the process I need to use. Not important at all
How much assistance I can get from advocacy or legal services	How much assistance I can get from advocacy or legal services Very important	How much assistance I can get from advocacy or legal services Important	How much assistance I can get from advocacy or legal services Not very important	How much assistance I can get from advocacy or legal services Not important at all
Financial reasons	Financial reasons Very important	Financial reasons Important	Financial reasons Not very important	Financial reasons Not important at all
How many times it has happened	How many times it has happened Very important	How many times it has happened Important	How many times it has happened Not very important	How many times it has happened Not important at all
My own self-confidence	My own self-confidence Very important	My own self-confidence Important	My own self-confidence Not very important	My own self-confidence Not important at all
My past experiences of taking action	My past experiences of taking action Very important	My past experiences of taking action Important	My past experiences of taking action Not very important	My past experiences of taking action Not important at all
Fear of retaliation	Fear of retaliation Very important	Fear of retaliation Important	Fear of retaliation Not very important	Fear of retaliation Not important at all
How much time and inconvenience would be involved	How much time and inconvenience would be involved Very important	How much time and inconvenience would be involved Important	How much time and inconvenience would be involved Not very important	How much time and inconvenience would be involved Not important at all
How seriously I am affected by the issue	How seriously I am affected by the issue Very important	How seriously I am affected by the issue Important	How seriously I am affected by the issue Not very important	How seriously I am affected by the issue Not important at all
How strongly I feel about the issue	How strongly I feel about the issue Very important	How strongly I feel about the issue Important	How strongly I feel about the issue Not very important	How strongly I feel about the issue Not important at all

Please coment

Question Title

7. Do you wish you had more knowledge about your rights and confidence to speak up to take the appropriate action to address issues of unfair treatment?

Yes, this is a big problem for me

Yes, I wish I spoke up more often

Perhaps, in some situations

No, I feel that I know when and how to speak up

No, I am very good at self advocacy

Yes, this is a big problem for me

Yes, I wish I spoke up more often

Perhaps, in some situations

No, I feel that I know when and how to speak up

No, I am very good at self advocacy

Please give details

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8. Can you describe a positive experience where you chose to speak up or take action and it was successful?

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9. Can you describe a time when you chose not to take action, or you took action and had a very negative experience?

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10. What are the greatest difficulties for you in getting an unfair situation remedied?

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11. How confident are you that you know your legal rights?

Very confident

Reasonably confident

Neutral

Not very confident

Not at all confident

Very confident

Reasonably confident

Neutral

Not very confident

Not at all confident

Please give details

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12. Which of the following would you like to see people with physical disabilities better informed about or trained in? (Tick as many as you like.)

Information on discrimination law

Disability-specific information on planning, tenancy and building law

Disability-specific information on consumer law

How to use the internet and social media for advocacy purposes

Disability-specific information on employment law

How to get involved in local community activism

Laws governing health and other disability services

Laws about how government systems run

How to make effective complaints

Negotiation skills

How to write letters and emails for various advocacy purposes

How to lobby government

Practical hints and tips from other people with spinal cord injury

Information about organisations that can help you advocate for yourself

Other (please specify)

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13. What advice do you have from your own experience for other people with a physical disability, about self advocacy?

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14. Are you interested in getting more involved in working for changes in the system and community generally?

Yes, in my local community

Yes, I am interested in lobbying government

Please comment

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15. Have you been involved in any of the following methods to highlight issues, remove barriers, protest against government policy?

	Yes	No
Signing up to petitions	Signing up to petitions Yes	Signing up to petitions No
Being on an access committee	Being on an access committee Yes	Being on an access committee No
Complaining about development applications	Complaining about development applications Yes	Complaining about development applications No
Writing to MPs	Writing to MPs Yes	Writing to MPs No
Submitting to government inquiries	Submitting to government inquiries Yes	Submitting to government inquiries No
Writing for online or print publication	Writing for online or print publication Yes	Writing for online or print publication No
Volunteering with NGOS	Volunteering with NGOS Yes	Volunteering with NGOS No
Attending protests or other events	Attending protests or other events Yes	Attending protests or other events No
Organising activities or campaigns	Organising activities or campaigns Yes	Organising activities or campaigns No

Please Comment

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16. What do you think would be helpful in supporting and encouraging people with physical disabilities to take action for change in society? Tick as many as you like.

Information about options for getting involved

Information about current issues

Learning how to lobby government

Support in getting to events

Information and training on how to organise events

Information and training about political processes

Information and training about planning processes

Please comment

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17. Can you describe an experience working for change in your wider community?

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18. Which of the following would you find most helpful for learning about your rights and how to make complaints or advocate for yourself?

Being provided a package of information

Websites with downloadable documents

Online videos or webinar(s)

Attending an information session or workshop

N/A or don't know

Please comment

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19. At what stage do you think information or training about rights and self-advocacy would be most helpful to people who acquire a disability?

As part of the rehabilitation program in hospital

Within the first 6 months of discharge

Within the first 6-12 months of discharge

N/A or don't know

Please comment

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20. Do you have any suggestions for the best way to help people with physical disability to advocate for themselves or for systemic changes?

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21. Do you give permission for your stories and answers to be used by SCIA for educational and other purposes? (You would not be identified.)

Yes

Please contact me if you want to use my stories (give your contact details here)