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The carers pension for Home dialysis carers

The first meeting to improve access to the carers pension has been held. 

Participants:
• Debbie Fortnum – National projects manager KHA (chair and minutes)
• Luke Toy – General manager – public affairs
• Shamus Brown – Social worker – Princess Alexandra QLD
• Anne Maxwell – Social worker – Taree area
• Jenny Rochford – Social worker Royal Melbourne
• Katie Parker – Social Worker St Vincents
Discussion:
• Introduction re positions and interest
DF – Special interest in support of Home dialysis patients
LT – Interested in government advocacy to change current system in relation to carers pension accessibility. Want equity in systems. Can look at applying to govt to change current system but this will be a 2-3 year process (if successful). Want to better understand need.
SB – Has developed a template letter to supplement current application form. Has had success in previously unsuccessful applications for both payment types. Wishes to formalise and expand this process.
AM – Has patients who have not been able to get either of the two available payments. Also struggles to get claim forms from Centrelink.
JR – To date have no unsuccessful claims but interested in ensuring access available. Have ways around the forms issues.
KP – To date have been successful in claims without special tactics. Have aways around the forms issues.
SM – email communication – has had success with applications by submitting detailed letters.
System in use at PA:
• Detailed letter that outlines every aspect of dialysis including general support
• Proposed to have additional tick checklist

Actions:

Survey to all social workers to better gauge extent of issue etc
(note ask questions re training financial support at same time) 

Document process and hints to make process simpler 

Develop template letter and use in different areas 

Develop group to help develop check-list –

All further communication to be by email although may have one more phone conference towards end of project. 
Email [email protected] for more information 

Re: Age appropriate resources for children?

I am just starting to scope this potential project.

Some topics for consideration as inclusion:

what do kidneys do
what is kidney disease
what is haemodialysis
what is transplant
what is peritoneal dialysis
FAQs important to kids
ie will my ** die
will my ** still be able to ...
does dialysis hurt

Would like to try and find a way to have a focus group to help advise us.  Maybe via kids camp and any of your contacts.

Some options for format
A5 picture and words booklet
fact sheet - not so friendly though
video - not so easy to make
cartoons
stories within booklet - explain dialysis via set characters etc 

Re: Age appropriate resources for children?

Hi Debbie,
Thanks for clarifying what i thought was the case.  It is definatly something i would like to progress and think is a need for the work i do.   
Cheers,
Jenny

Re: Age appropriate resources for children?

Hi Jen, it is still a gap.  It has been flagged and i started to try to work on some kids stuff with the paeds nurses but they were all too busy for it to go any further.

It wouldn't really be too hard though. Would the soical work group be interested in pursuing supporting this?

Debbie 

Age appropriate resources for children?

Hi All, I often get asked about age appropriate information for children who have parent's experiencing kidney disease to explain the possible impacts and also things to consider. I did some of my own research last year and spoke to KHA/Renal Resource Centre/Social Worker's at Paediatric Hospitals and was told that currently there aren't any specific resources and that clinicians are using adult information that is in simple form/easy to read.  I wanted to check that this is right? I was hopeful that there was a similar resource like the "talking to kids about cancer" by the Cancer Council but for Kidney Disease but this may be wishful thinking! Please let me know if you have anything that could be useful to help children understand and therefore, cope better.  Cheers, Jenny

Re: Working and dialysis

Training for home haemodialysis can be very lengthy and for those working this can affect their income.  KHA are currently trying to advocate for a leave payment to support this period of any patients life. 

In the meantime we have become aware that if a patient is single, has no leave available and can get a letter from their employer who intends to keep their job open to state this then they are eligible for sickness allowance via centrelink.  If their partner is non-working they can also claim.

Current payments per fortnight are:
single no  kids - $515.60
Single with dependent child(ren) $557.90
Single over 60 after 9 months $ 557.90
Partnered and under 60 $465.50 each
 
Thanks to Trish Kinkade for this information. 

Re: Social work information newsletter

Thanks Debbie. I plan to subscribe.
Social Justice Solutions can also be followed on Facebook. They share interesting and current informaton on their page daily.
It is definitely American based but great for us to be aware of their issues too.

Re: My Kidney My Choice Decision Aid Tool

HI Mary, I have realilsed that I cannot access your kidney care site from outside the hospital which is a pity.

Re: Social work information newsletter

Hi Lyndel,

This is an email address so that you can request to subscribe to the newsletters.  Sorry I should have made that clearer :)

Advance care planning

How are you managing this in your service?