The Australian Huntington's Disease Association in Victoria employs a team of professional staff to provide specialist HD services to individuals, families, carers and professional service providers throughout the State. Services include:

  • Information/education
  • Counselling & advice about HD issues
  • Assessment and referral
  • Service planning and coordination
  • Support for carers
  • Individual & systemic advocacy

WHO CAN ACCESS SERVICES FROM AHDA (Vic) Inc ?
AHDA (Vic) Inc. services are available to anyone affected by HD or anyone working with someone affected by HD. The way these services are provided will be negotiated on the basis of relative need and available resources.

AHDA (Vic) Inc. provides an outreach service where necessary. To ensure equity of access for people in rural & remote areas, a specifically appointed Rural Worker is able to travel in a flexible way to visit people affected by HD who need specialist information, assessment, counselling or referral.

People living in both metropolitan & rural & remote communities should contact AHDA (Vic) Inc. in exactly the same way by telephoning the office on 9563 3922 or toll free on 1800 063501.

WHEN SERVICES ARE PROVIDED BY AHDA (VIC) INC.
People affected by HD may need to have contact with specialist HD services many times over their lifetime as their situation changes, or they have new questions, or perhaps face difficult and sometimes unexpected issues.

At times they may also want to be able to predict some probabilities for the future and plan for them. At other times things may be so confusing or distressing it is hard to cope. Just talking about it to someone who understands HD can be a good start.

It may be that people become aware of the risk of HD in their family and want some information to be clear about what it means for them. They may want to make a major life decision and want to talk through the HD issues before making that decision. Sometimes HD in their life is pretty much in the background. At other times it looms to the fore, and even seems to take over. So, there are actually cycles that affect the kind of services people need. People go through a tough patch for a while and need extra help to "get through", then things settle down and they don't need that extra help.

At AHDA (Vic) Inc. we say that the times when people need extra help or support from us are the times we provide "an episode of service". During an episode of service people will have an AHDA (Vic) Inc. worker allocated. Their AHDA (Vic) Inc. worker will arrange a plan about how they will work together. When things settle down, it may be okay to finish that episode of service from AHDA(Vic) Inc. But everyone will know they can always seek another episode of service when needed. With people's consent, their worker can make arrangements for them to be contacted every 3-6 months, or as negotiated, after an episode of service just to check in and see how things are going

Anyone affected by HD may suddenly find something has changed, or they need or want some more information, or it feels as if a crisis has developed and they want some help from professionals who understand HD. Then they can simply contact AHDA (Vic) Inc. and ask for the Duty Worker.

Duty Workers are rostered to talk to people who contact AHDA (Vic) Inc. to provide the best assistance for any problem or situation as quickly as possible. The Duty Worker will talk things over and provide the information you want, or help you solve the problem you have. Or, perhaps you will need an AHDA (Vic) Inc. worker to start a new episode of service to help you over a period of time.

THINGS TO REMEMBER ABOUT GETTING SUPPORT WHEN NEEDED

  • People's need for AHDA (Vic) Inc. services tends to go in cycles, over lifetimes. So AHDA (Vic) Inc. has developed a way to handle these cycles of service need.
  • At AHDA (Vic) Inc. someone is always available during office hours to talk to anyone about problems and issues to do with HD. This is the Duty Worker.
  • If after you contact the Duty Worker, it is clear that more support is needed, you may agree to an AHDA (Vic) Inc.worker meeting with you to set some goals for an episode of service, which will last until you both agree it is okay to stop.
  • In between episodes of service, when things are not so bad, you can still contact the AHDA (Vic) Inc. Duty Worker, on any week day, during office hours, to talk about your experience, problems or needs.
  • One contact with the Duty Worker might be all that is needed, but if necessary, AHDA (Vic) Inc.can start a new episode of service at any time the Duty Worker is contacted.



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