Family member of someone with HD.
Rang Huntington's Victoria today with the hope of drawing on their knowledge and expertise regarding accomodation providers and Speech therapists with experience dealing with HD. The response was given that my sister had another support co-ordinator they would not be able to provide this information even though i am a family memeber of someone with Huntingtons disease. they may claim to be not for profit but sure seems like they will only assist if they can ensure they are getting funded out of your NDIS plan.
So much for supporting the family every step of the way
Hi Juckers,
Thank you for your feedback. It seems there may have been some misunderstanding in our communication today.
We truly understand your concern, and I’d like to clarify our approach. At Huntington’s Victoria, we work with many individuals whose NDIS packages are not managed by us. Our starting point is always to take the time to understand the person, their needs, and their current support network. We believe it’s essential to work collaboratively with the family and any existing service providers to ensure that the best possible recommendations are made. This includes recommendations for accommodation options, care, and service providers.
Without the necessary details, we cannot provide advice, as it’s not in the best interest of someone living with Huntington's disease to make such recommendations without this critical information. We want to ensure that we are supporting the individual in the most informed, personalised, and compassionate way.
I hope this clears up any confusion, and I would be happy to discuss further how we can best support you moving forward. Please feel free to call us back if you would like to discuss this further.
Kind regards,
Carly
HCC is not a crisis service so if you require immediate support and/or feel in danger or unsafe, we recommend that you please contact 000 or one of the following crisis support services.
