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What is advocacy?

All the latest advice and developments on how to advocate in today’s system

The following article reflects the very real need that people living with Huntington’s disease and their families have for support to best

“People with Huntington’s disease receiving disability or aged care services can access free, independent, individual advocacy services”.

manage their disability and aged care services. In addition to support coordination for the NDIS, there are independent individual advocacy services, funded by the Commonwealth Government which you are free (and indeed encouraged) to use if you are not getting satisfactory service from your provider.

In future editions of this newsletter we will examine various advocacy issues from an individual as well as a collective basis and explore what we can do together to address these issues. As the Huntington’s community is so small (compared e.g. to Alzheimer’s or Parkinson’s), we need to understand how to collaborate both within the Association and with external partners to achieve our advocacy goals.

Advocacy is the process of standing beside someone and supporting them to:

  • understand and exercise
    their rights.
  • have their voice heard.


  • speaking, writing or acting
    on behalf of another person
  • going into bat for another person
  • being on your side and
    no-one else’s.

Individual advocacy is not the same as systemic advocacy which is often managed by peak bodies such as People with Disability, NSW Council of Social Service or Consumers Health Forum. Independent individual disability and aged care advocacy services are funded by the Commonwealth government.


While anyone can be an advocate, an advocate in a funded organisation is a trained, impartial person who:

  •  takes the time to understand your views
    and wishes.
  • informs you of your rights and responsibilities
  • assists you to explore your options and make
  •  supports you to raise your concerns and work
    towards resolving them
  • provides practical assistance such as help to
    write a letter or raise your concerns at a
    meeting with your provide
  • speaks for you in situations where you don’t
    feel able to speak for yourself
  • increases your capacity to self-advocate if t
    his is what you want

Advocates can also support you in making formal complaints about a service or indeed about the NDIS/NDIA or My Aged Care.

NSW Advocacy Services

In NSW aged care advocacy is provided only by Seniors Rights Service, a member of the Older Persons Advocacy Network.
PHONE: 1800 700 600 www.opan.com.au

Disability advocacy is provided by around 20 different services across NSW. Some of them are region-specific and some are disability-specific.

The best place online to find the right type of service in your location is:


If you are struggling to find the right disability advocacy service for your needs, give me a call at Huntington’s NSW & ACT on 02 9874 9777 and we can talk through what’s best for you.

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