Self Funded Carers

[Tiggeroo]

Hey Guys,

I am posting this in "Something isn't right" because... it isn't... (Mods i really hope this is ok, if not I'm sorry!)

I am hoping to connect with other people who may be in a similar situation to me and my Bipolar Bear, to share their experiences with me to assist me in drafting a letter to my local pollies to hopefully, drive some change. I am more than happy to share any info I find to allow others to do the same. even the letter itself if you want it.

I am hoping to connect with self funded carers... carers who work to support their loved ones, family and a person struggling with Mental Health, with little to no financial or government support. If you are happy for me to share your frustrations and concerns, please share below. Here is why I am starting this journey. 

Bipolar bear was diagnosed at 23. He worked full time until 28 when his condition changed (was previously not managed properly) and he broke down. His condition leaves him crippled with anxiety at the thought of driving to work, interacting with others and getting home again. He has tried, believe me, he is very employable and has successfully gained employment on several occasions, only to be depressed to the point of suicidal a week later and physically incapable of even getting himself out of bed and showered. Which leaves us permanently as a single income household. I fortunately have a well paid job, which unfortunately rules him out for any type of assistance from centrelink... he cannot even apply for a healthcare card to subsidise his medications because you must be receiving another payment from them to be eligible. We fail the income test as a couple... so unless we lie, which i am aware is the preferred option for many, we are... for all intents and purposes... f*$ked. I refuse to lie to centrelink so instead, i am about to launch my own campaign, to highlight this issue, and ask the questions that currently have no answers. 

I am not able to claim Bipolar Bear as a dependant under the tax system, so why do centrelink consider us a couple???? this is the question along with a few others i will be directing to the rep.for social services. 

I earn all of our "combined income". I pay the rent, the bills, the insurance, i keep the car running, i feed us, it isn't easy... often bills go unpaid or late, we go hungry, we borrow money from my family... but we survive. Alongside that... i pay for private health insurance... which funny story, no longer covers his psychology sessions. I pay for his GP appointments because without a Health Care Card, he doesn't get Bulk Billed. I pay for his medications, one of which is Non-PBS... I pay for his PRIVATE Psychologist, because he is now only entitled to a laughable 6 Better Access sessions under Medicare (which also are not bulk billed because of the HCC issue), I pay $400 a session for his psychiatrist... i take time off to care for him when needed to the detriment of my employer. I do this because i love him... because i refuse to see him moving backwards in the public system which we can all see is broken... I pay this because when he did suffer a psychotic episode, he was failed by the public health system who had the police leave him unattended in a busy ED department and he got up and walked out and private facilities do not offer crisis intervention (just call the CATT team, they will help you right now.... *chuckles quietly). 

Why is bipolar bear ineligible for financial assistance (even just a health care card for his meds) because I work, yet i cannot claim anything for his care, and keeping him from being yet another statistic in a failing public mental health system. 

Why did Medicare cut Better Access from 12 sessions to 6?

Why should i carry top level Private Health cover (to avoid the medicare levy surcharge) who at the next moment can turn around and wipe private psychology and psychiatry off its schedule leaving me uncovered for services we NEED?

In saying all of this... it isn't just me i am seeking change for... would i like to be able to claim a dependent on my tax... yes. would i like his appointments and meds to be cheaper... of course... but i am sure there are many others in my situation with other factors to consider (children and other financial pressures) who cannot afford the care we can... but that doesn't mean they shouldn't have access to it. I am doing whatever i can to prevent us becoming more pressure on the public system... yet there is NO incentive for me to continue to do that other than love.

This system is broken... and it is unacceptable.

If you have any similar stories or thoughts, i would love to hear from you. 

Tigz

xx

[Victor]

Hi @Tiggeroo As long as there isn't any identifiable information, I don't see it being an issue. In terms of the posts location, I also don't see anything particularly wrong with it. I'll leave a note for the SANE management team to have a look over this thread when they're back in the office on Tuesday too. 

Cheers,

Victor. 

[Former-Member]

@Tiggeroo

I believe the carer allowance is not means tested - not sure what is required

https://www.humanservices.gov.au/individuals/services/centrelink/carer-allowance/claiming

[Former-Member]

@Exhausted1 @Carerofpotsie

[Tiggeroo]

Hey @Former-Member,

Bipolar Bear would not meet the diagnostic criteria when he is healthy... nevermind the fact he can swing between healthy and not healthy in a matter of moments!

And thank you @Victor, if not i am happy to move it or ammend it to get it to comply! 

Just hoping to get a few more voices in my choir before i head off singing! 🙂

Tigz

xx

[Former-Member]

@Tiggeroo

It is so very difficult and I do not know how people cope with rent payments let alone anything else. We were fortunate in that we had moved and downsized our mortgage significantly before Mr D became acute otherwise we would not have coped. We lived on my wage for a while and I could not claim Mr D as a dependent - like you say no tax incentives for couples with single income let alone those where one has a health condition that prevents them working. 

We do not have private health insurance, simply cannot afford it, I certainly could not afford $400 specialists bills, seeing a pdoc once every three months would be $135 month or $65 out of fortnightly pay  (probably inadequate when acute but 6 monthly minimum advised when stable). This is not taking into account the psychologist, medication or health fund costs that you are paying for.

Tigz - often private hospitals offer day programs and community outreach programs that are covered with private health. These are usually linked to an admission,  if you check the hospital website that bipolar bear was admitted to you might find some psychological support that way. 

[patientpatient]

Hi @Tiggeroo, In regard to psychologists and Better Access, the limit is 10 sessions (6 plus an extra 4 if the psych feels it's necessary and the GP does more paperwork). Still not enough and we've paid for extra. There's also a point where medical expenses become tax deductable. It's a relatively large amount and we did reach it one year (paying for medical procedures). Plus there used to be a cap on pharmaceutical costs once a limit was reached, not sure about now. $400 per psych session is a large amount. We asked around and there was a big variation in fees, eventually found a bulk-billing psychiatrist who has been very good.

[Carerofpotsie]

Yep it is a Broken system in many aspects and sadly we are left with making the choice of how to make ends meet 

[Zorro]

Hi 

I hear you!........................ going through exactly what you are going through and it is really tough yes. I would be very keen kick some of the pollies arses. If people dont experience what we experience they dont know it is like. 

While you are at it , my bi polar partner smokes as well , which is even a bigger drain on the finances, go out and buy the gum nicorettes and it is more expensive than the ciggarettes. Smokers pay abnormal amounts of tax in realtion to other Australians ....more than their fare share.

I have written to three of the liberal polles, the treasurer and health minister and did not even get a response to my letters. In the eyes of the pollies we are wasted space for which they have no time.

I think I might just throw in my job as well and let the government support us fulltime, then you will see them react.

Tiggeroo dont waste your time with the Liberals, I think we should now write to the labour side and ask them to ask the Liberals why no one has bothered to respond.embarrass the bastards I am sure Labour would like to that.

Wait there is a thing called email lets write to every parlimentartian in the labour party and lets embarras the Liberals......perhaps they might start listen to us with the elections coming up.

So count me in!! If you are keen to start a campaign. Lets get stuck into them.

[Zorro]

Thats is because we dont unite and make our voices heard