HD Australia

Hi everyone,

I was just wondering if anybody has any experience of the NSW Guardianship Tribunal. A family member (aged 66) with HD has been in an acute mental health unit in Sydney for almost 7 months. After one week in respite in an aged care facility in April he attempted self-harm and was returned to the mental health unit.

Last week there was a Guardianship Tribunal hearing (which I asked to attend and did) via videolink. I found this a totally unsatisfactory process for my family member - he was asked questions but because he has trouble speaking they didn't give him enough time to respond and took his first words as his complete answer. After 90 minutes of videolink "conferencing" with 3 people on the TV and 7 around our table, I have to admit my head was spinning.

I realise that there is probably nowhere he could be placed, that would "best suit his needs", as the Tribunal and mental health staff put it (Lottie Stewart only takes "youngies", and so at 66 he is too old).

The upshot of the hearing was that the Public Guardian has responsibility for his coercive (they didn't mention that word at all until right at the end when announcing their decision) accommodation and services. His wife has responsibility for medical, dental and welfare (she gained financial responsibilty 3 years ago).

My understanding is the Mental Health Unit now have to formulate a management plan for his discharge and suggest suitable aged care facilities - these are then sent to the Public Guardian who makes a decision as to where he will go (he only wants to go home - but he needs 24 hour care and his wife works fulltime).

Has anyone in NSW been down this path? Any hints, suggestions etc on what will/might happen?

I'd appreciate any help or input on what I might be able to do in this overwhelming situation, apart from continuing to visit and talk and listen. I just feel there should be some sort of experienced HD advocacy person (who knows their way around "the system") who can put forward the case for my family member, as he can't do it himself, and his wife is unwilling to get any more involved, and I feel way out of my depth.

Thanks for any information - I know a lot of you have been through similar situations - but this is my first time.

sonnie

Hello Sonnie
Sounds unpleasant to say the least
I have passed the information on to someone I know who may be able to provide some advice / information
Will come back with whatever he is able to provide
Mark

Hi Sonnie,

Whilst I am in the ACT I have had to go down the path of getting guardianship for my father. I find it quite odd that they subjected your pHD family member to questions at the tribunal. When we had the hearing here in the ACT I was responsible for attending as well as a community nurse from the older persons mental health unit. The reason Dad was not subjected to this was because he was in need of a guardian which was proved by mental health stepping in and therefore deemed that it would not be beneficial to either Dad or the hearing. Whilst we are in different states I would have thought that the guardianship tribunal would use a little more common sense when dealing with a situation like this. I understand that many of these tribunals have no understanding of huntington's disease but would have thought the fact he had been in a mental health facility for sometime would mean they would realise this person should not be subjected to questioning ect.

I'm sorry I haven't been much help but surely a doctor from the mental health unit could write a letter to back you up on this, even his normal gp should be able to do this considering he needs 24 hour care.

I hope things get a little easier for you and someone out there can assist further.

Big hugs
Carls xo

Thanks Mark and lilcarls for your replies.
I do remember, lilcarls, when you went down the guardianship path for your father, but wasn't sure of the details of the process. I'm not sure if it's different in the ACT, but I do think it's different procedures for each state. The videolink is something quite recent (apparently cost millions of dollars to set up the technology required in various hospitals around Sydney and NSW).

I think you're right lilcarls - I got the impression that the tribunal gang of three knew very little about HD, and this wasn't relevant in their opinion to the case at all.

No point in getting a doctor or anybody from the mental health unit to speak on my family member's behalf - they were all there to speak as support for the Public Guardian taking over. So the application to the Guardianship Tribunal was supported by the opinions of the registrar psychiatrist, the occupational therapist, the person from the aged care assessment team, the hospital social worker, and his wife. My lone voice and my family member's input paled in comparison to their numbers and copious notes. I thought it was particularly insulting and demeaning that these "professionals" spoke in a very uncaring and clinical way about my family member, and the symptoms he has, in his presence - I felt like saying - "He IS at this table and can hear all the things you are saying about his condition".

I am a cynic - but I got the impression they just want to reach some benchmark performance standard for moving him out of the mental health unit as it is going to look really bad for the statistics that he has been there for almost 7 months and they've basically done nothing for him - apart from not listenimng to what he wants, "to go home", and that he'll attempt self-harm again if he's put in a nursing home. The thing they are unhappy with is that he's not saying what they want to hear - that he wants to go into a nursing home, because that's not what he wants.

One thing I forgot to mention in my first post. He has no income at all. He worked all his life and retired 6 years ago, at 60, and paid off the mortgage on his and his wife's home with his total superannuation lump sum, and therefore has no income from super. He is not eligible for disability or aged pension from Centrelink because his wife works and they own their family home. His only asset is the family home, but his wife has indicated she is not prepared to sell that (nor would he want that, as that is where he wants to go), and my understanding is that she can continue to live in the family home if he is put into a nursing home. So I don't know where the $200,000 - $350,000 bond is going to come from, nor the weekly charges for the aged care facility placement.

What happens to people (with or without HD) who have no family or friends who can, or are willing to, offer financial as well as moral support, and who can't access any kind of government support??

Thanks for your help and thoughts on the subject.

sonnie

Dear Sonnie,
It’s always been a pain when the so called “officials” seems to do things by the book and not by your own personal situation. I do not know about this Public Guardian NSW (maybe, I should be starting to look into this). But let me tell you my situation which seems to evolve with the same scenario with your relatives. Currently, I am working full-time with 3 young kids and wife with HD that needs 24/7  care. I guess I need my job to pay for the mortgage, bills, some enjoyment for my kids, etc.  I was able to sponsor someone from Philippines to be a carer for my wife when I’m at work. I only provide home and shelter for him. The other money was coming from the Carer Allowance & Carer Payment  & some concession because he is not working and does not have much money. Even though I am,  sure I cannot afford to sent my wife to Lottie Stewart, I still prefer her to stay home. Lucky for me I found a relative who is reliable and understanding of our situations.


Im sorry for not being much of a help on this topic..
Take care,
Jim

Thanks for your reply Jim.
I realise there are two sides to every story - and naturally I'm on my uncle's side. Unfortunately there are no family members (apart from his wife, who, like you, is working fulltime to pay the bills etc) to help out - we all have the HD gene, including his 2 adult daughters, his sister etc - which is why I was reluctant to put up my hand to take over responsibility for any of his care - I know I'm not up to it, much as I wish I were able to help him.
I'm also aware that if my uncle goes home he will be at risk of falls and that he can't properly look after himself - there are stairs in his house and he needs assistance with daily living, such as showering and preparing and eating meals.
The truly sad thing is that when I talk with him at the mental health unit, I know that he and his essence are still there from his responses, sometimes he even smiles when I make a comment about trying to organise an escape plan for him - and then I say - whoops, you can't run, and I'm not strong enough to carry you out of here.
I spoke to his wife on the phone tonight - she is going to Centrelink (again!) tomorrow - so we will wait and see.
Thanks for your help,
sonnie

Hi again
Hope visit to Centrelink went well
I am back online after time away from computer.
I spoke with a person whose opinion I would trust, and he said the whole guardianship thing is potentially very difficult to negotiate, and seeking expert advice would be good - if you have done that already, perhaps different expert advice to what you already have if that has not worked out.
His suggestion was talking with a good social worker - no idea what access you have
He also suggested to me that I check a website http://www.gt.nsw.gov.au/ but you probably know about that material already.
Sorry I cannot provide more information at this stage
Mark
ps. In addition, my friend said a Chamber magistrate could be very helpful - so that avenue may be OK (and free) if you have not checked it out already.

Thanks, Mark. There is a hospital social worker already involved. I did access the government website before the Guardianship Tribunal hearing - so at least I was aware of the videolink format.

When I visited today my uncle said they were probably going to send him to an aged care facility that he has looked at before - it's a very old house (and at the time he visited beforehand my uncle said he wouldn't put a dog there - and that it looked like the setting for a horror movie). I've only seen it from the outside.

So we shall see what eventuates.

Thanks, everyone, for your replies.

sonnie