1. General information

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* 1. How did you access this survey?

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* 2. What is your age range and postcode?

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

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

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* 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
Ensure high quality EDUCATION is available to HD community members and care professionals
Provide HD-specific SERVICES that improve the quality of life for those impacted by HD
Raise AWARENESS of HD in communities where people with HD live and more broadly
Deliver ADVOCACY that aims to improve government policies and services within disability, health and social care and justice systems

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

  Not important Somewhat important Very important Extremely important
People with HD are provided services by people and organisations who understand HD
Provide the HD community with strategies for coping, care and support
Provide access to HD related forums and conferences
People with HD have access to support groups and social programs
Carers of people with HD have access to support groups
Children and young people impacted by HD have access to support
Formally evaluate our programs
Seek out high quality services which fill service, support and knowledge gaps
Lobby Governments to adequately fund Huntington’s NSW ACT
Lobby the NSW and ACT Governments to fund HD specialist social workers in each Local Health District
Campaign for HD specialist residential services in regional NSW and ACT
Campaign for HD specialist community services in regional NSW and ACT
Campaign for NDIS planners and providers to understand the needs of people with HD
Campaign for appropriate care for people with HD within the justice system
Everyone affected by HD has access to information in a form suitable to their needs
Promote access to up to date and accessible research reports
Promote specialised HD education opportunities
Represent the HD community at relevant industry forums and conferences

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* 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.

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* 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
Social/community participation
Capacity building (OT, speech, physiotherapy etc.)
Household duties
Improving health & well-being (exercise, dietician etc.)
Personal care
Behavioural management
Specialist Disability Accommodation
Supported Independent Living

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

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* 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
Life planning
Coping/Support tips
Connecting with HD community
Research updates explained
Assisting professionals to help me
0 of 10 answered
 

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