Huntington's NSW & ACT 2020 Community Survey

We would be grateful if you would take 5 minutes to complete this survey. Your confidential input will help us to remain focused on your needs and desires as much as possible during and after COVID-19.

1. General information

Question Title

* 1. How did you access this survey?

Newsletter (hard copy)

Newsletter (email version)

Website

Social media (Facebook, Twitter, LinkedIn, Instagram)

ALSO = Holiday house draw!
I'd like to be contacted to discuss my answers further and be entered into the draw to win a stay in a holiday house near Wollombi (HD Families only).
Please tell us your thoughts and leave your name, email and phone details below:

Question Title

* 2. What is your age range and postcode?

Under 12

12-17

18-24

25-34

35-44

45-54

55-64

65-74

75 or older

2 b) What is your postcode?

Question Title

* 3. Please select any / all option/s that you best identify with:
(You can tick more than one box.)

Aboriginal

Torres Strait Islander

LGBTQ+

Culturally and Linguistically Diverse (CALD)

Person with disability

Female

Male

I prefer not to answer

What language do you speak in your home?

Question Title

* 4. What is your relationship to Huntington's disease (HD)?
(You can tick more than one box.)

I'm a person living with HD

I'm at risk of developing HD

I'm a Carer

I have a parent with HD

I have/had a family member with HD

I have/had a friend with HD

I'm a Health or Allied health professional

I'm a Social, Disability or Aged care professional

I'm a Disability, Aged Care or Health service provider

I'm a Researcher

No immediate contact or involvement

Other (please specify)

Question Title

* 5. How would you rate us against our goals for NSW and ACT:
View our Strategic plan at: https://huntingtonsnswact.org.au/about/how-we-know-we-are-succeeding/

	Poor	Satisfactory	Excellent	Don't know
Provide HD INFORMATION to community members and care professionals	Provide HD INFORMATION to community members and care professionals Poor	Provide HD INFORMATION to community members and care professionals Satisfactory	Provide HD INFORMATION to community members and care professionals Excellent	Provide HD INFORMATION to community members and care professionals Don't know
Ensure high quality EDUCATION is available to HD community members and care professionals	Ensure high quality EDUCATION is available to HD community members and care professionals Poor	Ensure high quality EDUCATION is available to HD community members and care professionals Satisfactory	Ensure high quality EDUCATION is available to HD community members and care professionals Excellent	Ensure high quality EDUCATION is available to HD community members and care professionals Don't know
Provide HD-specific SERVICES that improve the quality of life for those impacted by HD	Provide HD-specific SERVICES that improve the quality of life for those impacted by HD Poor	Provide HD-specific SERVICES that improve the quality of life for those impacted by HD Satisfactory	Provide HD-specific SERVICES that improve the quality of life for those impacted by HD Excellent	Provide HD-specific SERVICES that improve the quality of life for those impacted by HD Don't know
Raise AWARENESS of HD in communities where people with HD live and more broadly	Raise AWARENESS of HD in communities where people with HD live and more broadly Poor	Raise AWARENESS of HD in communities where people with HD live and more broadly Satisfactory	Raise AWARENESS of HD in communities where people with HD live and more broadly Excellent	Raise AWARENESS of HD in communities where people with HD live and more broadly Don't know
Deliver ADVOCACY that aims to improve government policies and services within disability, health and social care and justice systems	Deliver ADVOCACY that aims to improve government policies and services within disability, health and social care and justice systems Poor	Deliver ADVOCACY that aims to improve government policies and services within disability, health and social care and justice systems Satisfactory	Deliver ADVOCACY that aims to improve government policies and services within disability, health and social care and justice systems Excellent	Deliver ADVOCACY that aims to improve government policies and services within disability, health and social care and justice systems Don't know

Question Title

* 6. How important are our strategic objectives to you?

Are there any other objectives or activities you would like to see us pursuing?

Question Title

* 7. Is there a person with HD in your household who is an National Disability Insurance Scheme (NDIS) participant?
If not, please tick the 'No' box and go to Q9.

Yes with no support coordination

Yes and with support coordination from Huntington's NSW ACT

Yes and with support coordination from another organisation

Other (please specify)

Question Title

* 8. ONLY if you answered yes to Q. 7:
How happy are your with the NDIS services received for:
(leave section blank if not receiving that service type)

	Not at all happy	Somewhat happy	Quite happy	Very happy	N/A
Support coordination	Support coordination Not at all happy	Support coordination Somewhat happy	Support coordination Quite happy	Support coordination Very happy	Support coordination N/A
If unhappy, can you suggest what needs to improve?
Social/community participation	Social/community participation Not at all happy	Social/community participation Somewhat happy	Social/community participation Quite happy	Social/community participation Very happy	Social/community participation N/A
If unhappy, can you suggest what needs to improve?
Capacity building (OT, speech, physiotherapy etc.)	Capacity building (OT, speech, physiotherapy etc.) Not at all happy	Capacity building (OT, speech, physiotherapy etc.) Somewhat happy	Capacity building (OT, speech, physiotherapy etc.) Quite happy	Capacity building (OT, speech, physiotherapy etc.) Very happy	Capacity building (OT, speech, physiotherapy etc.) N/A
If unhappy, can you suggest what needs to improve?
Household duties	Household duties Not at all happy	Household duties Somewhat happy	Household duties Quite happy	Household duties Very happy	Household duties N/A
If unhappy, can you suggest what needs to improve?
Improving health & well-being (exercise, dietician etc.)	Improving health & well-being (exercise, dietician etc.) Not at all happy	Improving health & well-being (exercise, dietician etc.) Somewhat happy	Improving health & well-being (exercise, dietician etc.) Quite happy	Improving health & well-being (exercise, dietician etc.) Very happy	Improving health & well-being (exercise, dietician etc.) N/A
If unhappy, can you suggest what needs to improve?
Personal care	Personal care Not at all happy	Personal care Somewhat happy	Personal care Quite happy	Personal care Very happy	Personal care N/A
If unhappy, can you suggest what needs to improve?
Behavioural management	Behavioural management Not at all happy	Behavioural management Somewhat happy	Behavioural management Quite happy	Behavioural management Very happy	Behavioural management N/A
If unhappy, can you suggest what needs to improve?
Specialist Disability Accommodation	Specialist Disability Accommodation Not at all happy	Specialist Disability Accommodation Somewhat happy	Specialist Disability Accommodation Quite happy	Specialist Disability Accommodation Very happy	Specialist Disability Accommodation N/A
If unhappy, can you suggest what needs to improve?
Supported Independent Living	Supported Independent Living Not at all happy	Supported Independent Living Somewhat happy	Supported Independent Living Quite happy	Supported Independent Living Very happy	Supported Independent Living N/A
If unhappy, can you suggest what needs to improve?

Question Title

* 9. HD Youth Connection Program (you can tick one or more than one box)

Please check the box if you have heard of this program

Please check the box if you or a family member has used this program.

If you or a younger family member has not used this program, what are the main barriers for you or them?

Question Title

* 10. We are planning to establish an online HD education program for families and providers. Please rate the importance to you and your family of the issues below.

	Not important	Somewhat important	Very important	N/A
Living well with HD	Living well with HD Not important	Living well with HD Somewhat important	Living well with HD Very important	Living well with HD N/A
Life planning	Life planning Not important	Life planning Somewhat important	Life planning Very important	Life planning N/A
Coping/Support tips	Coping/Support tips Not important	Coping/Support tips Somewhat important	Coping/Support tips Very important	Coping/Support tips N/A
Connecting with HD community	Connecting with HD community Not important	Connecting with HD community Somewhat important	Connecting with HD community Very important	Connecting with HD community N/A
Research updates explained	Research updates explained Not important	Research updates explained Somewhat important	Research updates explained Very important	Research updates explained N/A
Assisting professionals to help me	Assisting professionals to help me Not important	Assisting professionals to help me Somewhat important	Assisting professionals to help me Very important	Assisting professionals to help me N/A

Please share any other thoughts you have about HD education. And what are any other issues you'd like to see us focus on?

Huntington's NSW & ACT 2020 Community SurveyWe would be grateful if you would take 5 minutes to complete this survey. Your confidential input will help us to remain focused on your needs and desires as much as possible during and after COVID-19.

1. General information

Question Title

* 1. How did you access this survey?

Question Title

* 2. What is your age range and postcode?

Question Title

* 3. Please select any / all option/s that you best identify with:(You can tick more than one box.)

Question Title

* 4. What is your relationship to Huntington's disease (HD)? (You can tick more than one box.)

Question Title

* 5. How would you rate us against our goals for NSW and ACT:View our Strategic plan at: https://huntingtonsnswact.org.au/about/how-we-know-we-are-succeeding/

Question Title

* 6. How important are our strategic objectives to you?

Question Title

* 7. Is there a person with HD in your household who is an National Disability Insurance Scheme (NDIS) participant? If not, please tick the 'No' box and go to Q9.

Question Title

* 8. ONLY if you answered yes to Q. 7: How happy are your with the NDIS services received for:(leave section blank if not receiving that service type)

Question Title

* 9. HD Youth Connection Program (you can tick one or more than one box)

Question Title

* 10. We are planning to establish an online HD education program for families and providers. Please rate the importance to you and your family of the issues below.

Huntington's NSW & ACT 2020 Community Survey

We would be grateful if you would take 5 minutes to complete this survey. Your confidential input will help us to remain focused on your needs and desires as much as possible during and after COVID-19.

* 3. Please select any / all option/s that you best identify with:
(You can tick more than one box.)

* 4. What is your relationship to Huntington's disease (HD)?
(You can tick more than one box.)

* 5. How would you rate us against our goals for NSW and ACT:
View our Strategic plan at: https://huntingtonsnswact.org.au/about/how-we-know-we-are-succeeding/

* 7. Is there a person with HD in your household who is an National Disability Insurance Scheme (NDIS) participant?
If not, please tick the 'No' box and go to Q9.

* 8. ONLY if you answered yes to Q. 7:
How happy are your with the NDIS services received for:
(leave section blank if not receiving that service type)