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Judgement – Part 2

Published August 16, 2019 by helentastic67

 

Judgement – Part 2

On a more humorous front and when I do so call “Judgement” I do it with subtlety. This is a watch and learn teaching moment. But in reading form.

About ten years ago, I was on a train on a Saturday morning with my then boyfriend, going to Preston to the markets. Saturday morning’s I set the standard if we were going, we would have to be there by 10am and out of there by 11am.

After that time, it was pointless being there because it is full of bargain hunters who try to get that last-minute special. My plan is to get there, hit it hard, then get the hell out of there and get home.

When I do the market, it’s generally vegies, meat, fresh pasta, rice, nuts, passata, meat, coffee/fresh biscuits, deli olives, cheese, fresh bread and did I mention meat? If I don’t spend at least $100 and stock up my fridge and freezer, I’ve wasted my time. Remember, I’m making my Nona proud.

 

 

 

 

 

 

 

 

 

 

 

My boyfriend hated going because he couldn’t work out where everything was and he had the job of pushing the shopping trolley (which you could easily wheel it behind you on its two wheels) but he was a little too tall and because literally five minutes after we got there he would need to use the bathroom. He had the ‘bladder like a sieve’. I mentioned his sense of direction, I would walk behind him and call out directions like a military Sargent, “Left” or “Right” when it was necessary for him to change directions.

I always found it quite humorous although he obviously hated being micromanaged as men do. However, I used to make our adventures so he would cope better.

Usually I would have to convince the boyfriend to return to the Preston Markets, which we would generally go once a month and I did this by way of his pocket. As it’s the language that directly speaks to men. “We can go to the supermarket and spend $200 or we can go to the Market and spend only $100, so we would go to the markets.

I would go to the supermarket weekly to get the groceries and he would refund me. I digress, oh my God, went way out of left field on this on. Kinda feel like the judgement part” is the punch line.

On the train journey there, we went five or six stops from home in Clifton Hill at the time, we encountered all kinds of people. People going to work, people going home, people going home from clubbing the night before. The really seedy types who looked like they had slept in their clothes on a park bench in the city, who looked a little worse for wear for their efforts.

One morning, a guy in his 20’s walked down the train isle towards us, who fitted into the latter category. T-shirt (dirty), jeans (dirty), messy hair and runners. As he headed in our direction, I turned my head slightly towards my right (where my boyfriend was seated) and muttered “haircut and belt.” He had seen him coming, also and made a little noise.

See? Subtle! (bitchy, sure) but subtle. And not every bit of commentary is for public consumption.

 

Life Works

Published July 29, 2019 by helentastic67

Life Works

I have implemented many thing’s gradually over the years to make Life Work. Also, likely helps my brain be a bit happier, even though one of my processes requires at least an hour of my time on a Sunday every single week.

But I do it.

I have a spreadsheet a friend created for me, that I enter the details of carers I’ve had, from what time they started to what time their shift finished with me. The type shift it was (PC/HC/FP/Shopping/CA)

PC – Personal Care
HC – Homecare (also called General)
FP – Food Preparation
CA – Community Access

*Here’s the thing that should excuse my Service Providers, I even comment if they were late, didn’t turn up at all or the person I was expecting didn’t show and someone else did in their place and nobody bothered to call and tell me.

I guess, you might consider it part of my initial auditing system. It’s probably also, why a Service Provider I originally went with has never put my name forward to be called to be audited by the NDIS. Yeah.

One day, my Case Manager (Now called Service Co-ordinator) was on my computer while I was out of the room getting started on ‘something’ and I realized later I had been updating my spreadsheet before he arrived, despite it not being a Sunday.

After he left, I found sitting on my desktop a there was a screen-shot of my spreadsheet just sitting there. So innocently, um…

He had very obviously taken a screen shot to email it to himself and not thought to get rid of the evidence.

Did I mention it to anyone? Was it my fault? (not victim blaming) just being trusting. Obviously, I shouldn’t have had the file open or let him even on my computer. However, I don’t use them for any services anymore. I do not recommend them and if anybody asks, I don’t suggest them. Sounds bitchy, I am aware, however. Finally, the person who is always treated like a commodity, has the power. I can take my funding elsewhere.

This is why I’m often doing emails at 1am and going to bed so late. I wish my day ended at 5pm.

 

Red Tape

Published October 12, 2018 by helentastic67

Red Tape 2

Red Tape

People who don’t work or live in a world of disability don’t understand what life is like without.

Able bodied

Last week I spent some time with a brain injury group and the moment I sat down, I felt the clawing hands of desperation to get at my funding, to benefit the place I was at.

Desperate for funding

I mean, I walked in and all the members were excited because they were all waiting patiently for “stuff to happen.” Then the staff started treating me like I worked there. How many people are coming? Where is Neil?

Treat like staff

Admittedly, I live closer than Neil (who is from the Peninsula and runs a group called ‘United Brains’) There weren’t enough chairs and I was informed  there were “staff” in the meeting room next door and they were using all the chairs.

Staff

Call me crazy, but I don’t think much success can come of a business model that doesn’t prioritise chairs for welcoming visitors. That’s not even the thing that made me completely livid last week.

Welcoming visitors

But the ‘thing’ that annoyed me the most was when one woman stated the staff at the NDIA don’t come from a disability background, because they want to treat us like we are NORMAL.

NDIS

Grrrrrrr….. this is why I’ve had to explain what my AFO does, why I had medically approved shoes and why I deal with migraines all the damn time.

I’m pretty certain, I’ve NEVER BEEN NORMAL!

Never Normal

Normal does sound pretty boring.

Normal is boring

 

Land of Funding

Published October 8, 2018 by helentastic67

Land of funding

Land of Funding

People may wonder how I’ve had my disability for 12 years, yet have not qualified for funding before the NDIS kicked in a few years ago.

NDIS is coming

Well, if I were to do it justice, I could write a book or this blog would be about nothing but ‘how the system failed me.’ But however, I don’t want to issue you all with warnings to go hide your razor blades or pills or any other dangerous self-harming implements’ (in America I guess that includes guns!)

Self Harm

So, allow me to do an abridged version. Ok, I’ll try.

If I was diagnosed early, say under twenty years of age, bingo. There would be FUNDING.

Under 20

If I was a mangled ‘thing’ in a nursing home under forty years old. BIG FUNDING.

Under 40

If I’d been in a car accident, even if I was off my face on drugs and smashed (drunk), I’d have TAC funding.

Car accident

That and all of the above means, I might not even need carers, I might be able to drive still, but I would have so much money I could get new computers, smart phones, iPads, Playstations (is that the gadget these days?) every other year and no one would stop me.

new equipment

However, I had to do it the hard way. When do I not?

After my treatment and the ‘fall-out’ that gave me my disability. Maybe because I was maintaining life independently and didn’t spend time as an inpatient in rehab, learning how to walk and talk (not complaining. Just stating facts) I started ringing around to see how this world I now had to navigate worked.

Navigate the new world 1

I rang DHS (Department of Human Services) they do Case Management, but are so overrun, they outsourced to other agencies and businesses that they then find.

DHS

I was given two names that I followed up. The first sounded reliable, but had a huge waiting list. I rode them like a kid on a bicycle. I rang so much staff turned over and eventually I was given short-term Case Management to achieve some goals.

I’m sure I mentioned how GOAL AND OUTCOME DRIVEN the land of funding is.

Goal and Outcome

Because apparently, anything less is not worth doing. Please not sarcasm.

I digress. I have dealt with two different Case Management companies (they say they are organisations but they work on a business model “to make money”) so they are companies.

Make money

The first I had an Advocate and made a complaint to the Disability Commissioners office. Case Management companies literally can sign you up, give you the ‘YES, YES, YES’ go back to the office and never speak to you again.

Yes

Both companies always said “YES, YES, YES” we will do an application for an ISP (Individual Support Package) and it never fucking happened. One company gave me the excuse that they are rarely fucked. It’s not good enough reason not to do one though is it?

I really could go on and on about this topic and Helen’s lack thereof, but it is likely almost enough now.

I guess also that the system failed me because while there were whispers of the impending upcoming NDIS, everyone thought it would solve my problems. It was painted as a light at the end of a very dark tunnel. So, everyone let me wait.

Problem solver

So, I’ve struggled, I’ve had to move house four times since my diagnosis, not always because next was outrageously high or lack of decent housemates not wanting to deal with shitty, stressful housemate drama anymore or even that I’ve used every dollar I had on renting and much from my father and lastly is the constant reminder from others, who don’t have any money issues or funding issues, trying to give me their opinions on the thing, the thing, the thing and the thing, when they really know not a God damn thing about it.

Dad money

Busy Brain

Published March 3, 2017 by helentastic67

busy-brain-1

Busy Brain

It’s not something I’ve been officially diagnosed with and I’m sure other Mental Health related conditions might experience these symptoms, but in my case my mind is always (for want of a better word) “ON”.

 

Planning, problem solving, writing, scheduling, busy, busy, busy! Bills to pay, rent due, incoming, outgoing. People I want to see, people I have to see, brain training, appointments that keep me mobile. And I’m very lucky I can do all these things, hear me?

BECAUSE THEY KEEP ME INDEPENDENT!

independent-living

But at the end of the day, I sit on the couch, amongst my ‘In Tray’ and I attempt to catch up on my admin.

Attending to the mail, scheduling when bills are due, when they need to be paid, brain training (OK-pirating) and brain training (word finders, puzzles, list making) and often it’s around 9 pm, I have dinner.

busy-brain-3

And then I settle into email-mode! I know, ridiculous. And then I have to start trying to turn off the busy brain! And that’s why I like to finish the night with a TV show where I don’t touch a remote or my iPad or my phone or anything.

I call it ‘Single-Tasking’.

Impossible being One-Handed…

one-handed

Motivation

Published November 21, 2016 by helentastic67

Lack of motivation

Motivation

Plenty to write about at the moment, just lacking the motivation to do so. Sometimes, the living life and dealing with idiots gets to me. There’s the daily carers on those days I aim to be presentable to get out of the house, the call to keep those things ticking over! The constant negotiations to keep even those things to happen. And hoping and praying that at the end of the month, I have the money to pay the rent on time! I like to pay things on or before the due date. I don’t like having to rely on others to do more than I need them to, so I’m disappointed or let down.

carer

Right now, I’m mentally preparing for my 2nd appeal for my Pension and the debt. I’m hoping I can appeal to their humanity (I know, I’m crazy) because no matter how it goes on the day, if it’s a positive outcome, my mum will claim victory and if it’s a negative outcome, my mum will interrogate me as to what I said and that it was somehow pivotal to their decision.

lack-of-money

I hope what I say expressed to them how their decision will impact if I have to move (AGAIN) if I will need to live further from my comfort zone, in a less safe area! Further from the services I rely on and even if I can afford to buy the 2 new pairs of pants I wear all year round, but time getting new ones, just in time for winter when I need the added warmth more. Two new pairs cost less than $100.00 and I’m struggling with the concept that this is not the world I want to live in!

track-pants

But I can’t afford to survive or live anywhere else!

My hand is numb! Stopping now!

the-end

 

 

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