funding

All posts tagged funding

NDIS

Published January 14, 2019 by helentastic67

ndis 1

NDIS

One of these days Alice! One of these days! One of my work colleagues (still a friend) from fifteen years ago, used to say that to me all the time when I was giving him a bit of SASS.

one of these days alice

What can I say? I refer to him as my Gay Silver Fox.

grey silver fox

Anyway, I digress.

One of theses days I want to be able to tell someone how amazing it is to have the NDIS. If your new to my blog, National Disability Insurance Scheme.

how great is the ndis

I don’t want to utter the words. It’s an absolute shitstorm of red tape and the goal posts moving and it’s a friggin’ nightmare.

Why is it so hard?

Should point out the NDIS is the ONLY FUNDING I’ve had.

Wait, I had some one-off funding of $9,000 about five years ago, which is how I bought my laptop, iPad and iPhone and a number of other things.

ipad

When you first get given that kind of funding and a time limit of six months to spend it. (it must be spent on disability related such and such) You struggle to imagine how you will use it all.

funding

But, nailed it, I did.

nailed it

But, seriously the NDIS!!!

seriously ndis

Rehab – Part 1

Published October 19, 2018 by helentastic67

Rehab Part 1

Rehab –  Part 1

Ok, not the NA/AA type. But the physio and OT type.

Being part of a Brain Injury community in Melbourne, like anywhere I imagine, I’ve met kids of people with all kinds of brain injuries. I’ve also heard many different stories of where people were and what they could or couldn’t do when they woke up.

There’s the guy who woke from a coma to a song on the radio, “Stairway to Heaven”

WT Hell?

Great song however, inappropriate.

Don’t know how long he was in this coma; however, he is a bit of the num nut. Likely never be independent despite his obvious ability to walk and talk. His thought process and thinking has obviously been affected.

Num nut

Another woke in rehab, unable to walk or talk. This person can do both now however, both are significantly compromised.

I was really lucky, because of the nature of my AVM and course of treatment, everything that happened to me, I had a say in and everything that happened as far as “fall-out” I was completely conscious for and aware of.

There was that moment when my boyfriend came through the lounge room and saw me in only my nightie, leaning down to do something on my laptop on the coffee table and he mentioned my left calf was (well, not there) compared to my right calf.

Laptop

I had been a little oblivious to that and I imagine I had been unable to rely on that leg for strength or stability. But, I have been lucky not to wake in a hospital bed somewhere unable to comprehend what exactly happened.

Waking in hospital

Now, I’m not saying my rehab has been all fun and games. I did struggle because my left arm worked some days and not others for a little while.

I recall days I struggle to do up my shoe laces an another I cried in frustration on trying to put on a bra. I choose not to leave the house without both and when I actually went to see my main specialist about six months after my treatment, he noticed my left arm, I was nursing on my left thigh. He noticed straight away and asked how long it had been like that? I didn’t know, it had come and gone so even my mum who was sitting beside me couldn’t answer. That day he referred me to physio.

Bra

I did some weekly physio and OT appointments and I was set up with exercises to continue at home. I luckily didn’t lose any of that. I do recall a question being asked of me “How do you manage with opening cans?” I told them I managed fine, because at the time I had a boyfriend. After he left I still managed fine.

Physio

Because I’d put the can opener on the tin, take it off, turn the tin a little and put it back on again. And repeat, until I’d opened the damn tin.

Looking back, how did they not realize this is how I would develop Carpel Tunnel?

My people to arrange this were very lax/lazy because funding requires a lot of paperwork and they know the NDIS was coming (one day), so they never bothered to help me get funding. I got my disc bulge and Carpel Tunnel.

Entering my brief time as an inpatient in rehab, I was an outpatient meaning I would go once a week across town to Caulfield. At the time I lived in Clifton Hill, where I can every Wednesday and I was referred to Caulfield, as it was in the “catchment” of my hospital. (The Alfred Hospital)

Notwithstanding, my mum would drive three and half hours to Melbourne, arriving just in time to scoop me up and get us both to Caulfield.

Long drive

Have I mentioned how much I love my mum?

I digress, where was I?

But I think those early days of physio/OT for me were maybe too soon, or something, not sure. But I struggled with the “make your arm loooong” In an Irish accent to grab that thing. But eventually after about nine years, my walking and hyperextension was being addressed and it was on my side of town. Through a different hospital.

Over the last fifteen years, I think I’ve been to most (not all), but most of the public hospitals for one thing or another.

Hospital visit

Then I found myself at a rehab hospital for two whole weeks as an inpatient.

I’m just saying.

I do not cope well in hospitals where I’m not allowed to go home and seriously I had appointments I maintained out, several days each week and had visitors.

I would often return from my standard weekly appointments with my keep cup in hand and as the lift door opened to the nurse’s station, they would all look up at me. They had insisted with Botox in my calf and a plaster cast on my let.

Calf muscles

Yes, that’s right. Botox in my calf and a cast. They were afraid I would fall over at home. Well, and they didn’t want me getting the cast wet and after two weeks (two different casts) I argued I was getting the cast wet in hospital with the help of four nurses.

So what difference would it make if I was home?

Next

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

Guinea Pig

Published April 28, 2017 by helentastic67

Guinea Pig

Guinea Pig

I find I’m often asked to take part in trials because I seem to respond well to treatments and I’m articulate enough to tell people what’s going on.

There are Pro’s and Con’s to this.

The simple ones being I get to do things I can’t afford and aren’t available through the public medical system. The down side is, I get given less than spectacular equipment that helps them get the results, ongoing funding things they need after lying to me about all the great things they will do/give me.

Guinea Pig 1

All while sabotaging me from getting what I need. Case in point, I was part of a Botox trial to stretch my calf muscles and improve my walking and fix my hyper-extension, so in the time I wouldn’t need a knee replacement.

I was told I’d be put in a cast and if I managed to not fall over, they’d send me home. I’d be recast after a week in a slightly more uncomfortable position (calf to toes) and maybe again for a 3rd and 4th week. During the 1st and 2nd week I left the hospital in self-funded taxi’s (taxi’s I couldn’t afford) and went back to my neighbourhood to appointments I couldn’t live without.

I did get good coffee.

In hospital, I was bullied and not given pain meds my own GP prescribed me. I had supplied my own meds and while kept under lock and key, they refused to give them to me, adding to my stress.

But even after two weeks, they refused to let me go home. They insisted on keeping me in despite knowing it stressed me and I didn’t need to be there. They kept insisting to keep me in because they thought I’d get my cast wet if I went home. My cast got wet! EVERY SINGLE SHOWER I had in hospital.

Eventually, I think I growled sufficiently at a new doctor at the rounds and they set me free.

  • Public hospitals: They have a body in a bed and they get funded!
  • Every person their cat and dog came to visit me, access me, learn from me, all so they can tick their boxes and get more funding.
  • They told me they’d send me home with shoes they would fund. I could no long wear my beloved shoes.

 

Orthotic shoes

On the way home mum took me shopping for some temporary shoes, as there had been nothing but excuses. They eventually did fund me shoes that wore very quickly, I nearly twisted my ankle and it meant after 4 months needed replacing, I could get another pair funded for 12 months.

Expensive shoes

My mum paid for the cost expensive pair of shoes, I’ve ever owned and they are medically approved shoes. That I then had to find someone to reimburse my mum. She is not wealthy.

I still have my hyper-extension 2 years later.

Guinea Pig 2

Competition – WTF

Published January 9, 2017 by helentastic67

competition

Competition – WTF

I don’t know what it is with some people and their Brain Injuries. They get very competitive.

“MY BRAIN INJURY IS WORSE THAN YOURS!”

competition-2

And I’m here to stay….. YES IT IS!

competition-1

Being part of a community of people with Brain Injuries and the community mentality that we can all be grouped together (socially and otherwise) means everyone thinks their Brain Injury is worse than the next person.

brain-injury-1

No one seems to have any appreciation for how the next person’s situation is completely different to everyone else.

we-are-not-all-the-same-2

I find it very frustrating that people are actually competing about who is getting the NDIS first. Let me tell you, the pilot regions got it first and in the scheme of things “took one for the Team” and ironed out all the kinks. (well most of them).

Ironing out the kinks.

I live in one of the 4 council districts in North/East Melbourne that are getting it on July 1st 2016,

I have a friend (loose term) who loves to tell me he’s getting it before me!

Um! Let’s call him Fred! And remember, his name is not Fred and I really hope I don’t meet a Fred, be or have a Fred follow my blog because then I’ll be in trouble!

friend-fred

So, let me give you some background re-Fred. He owns his own home, he has family close by who include him in their lives, he can work and study.

He most importantly has a package (ISP Individual Support Package) which pays for carers, he chooses NOT to use because he finds them inconvenient and uses the funds for other purposes.

I know people who have TAC funding. (Funded because of car accident) who won their own home. Some are happy to brag about how poor they are while they have an excess. Some who have their own home because of TAC who are quiet and humble and very kind.

funding-2

To be clear, TAC funding and people on Workcover because they were injured on the way to work, there supports will end when the NDIS takes over.

Some people with TAC funding are getting on board to find out what to expect.

Others I’ve tried to tell them they need to catch up and learn about the NDIS because it will affect them. They are burying their heads in the sand.

Sink or swim right.

You can lead a horse to water, but you can’t make them drink it.

But in the meantime, let’s be a bit nicer to each other.

It that too much to ask?

be-kind

 

Things to Miss: Fred!

Published February 19, 2016 by helentastic67

Things to miss 3

There are many things I miss from the era before I developed my disability and I’m not referring to the stuff you would miss because you can no longer do them, because sooner or later  you can’t go clubbing all night and not feel like crap the next day even if you don’t drink. That shit happens because you have gotten older and I miss feeling like a valued member of society. I miss intellectual conversations with people.

Once upon a time, I worked for an N.G.O.  as I will have mentioned and a supervisor came to me with a problem. I gave him the answer, he didn’t want. That was “NO!” Then he had a follow up question to circumvent the first answer. To which he got a further answer of “Yes, but NO!” then for safe keeping I answered his next 4 questions; something like this “Yes, no, no, no, yes, no!” I know I could tell you the scenario to help you better understand and while it was 10 years ago, I no-longer recall the clients name but let’s call him Fred!(was definitely not Fred) but recall the situation perfectly, it’s not going to help you to bore you with all the details.

His response to my answers was “What was that for?” And I told him they were the answers to his next 4 questions because I knew exactly where he was going with his line of questioning. The moral of the story was Fred had been lax in starting his obligation. He could not come back as a new referral for the outstanding hours he had missed before his contract ended. He could come back for a whole new obligation before he would be eligible for the allocated funding to go toward studies & further training. Hope you can tell from this that I knew my stuff, despite the terminology I’ve just used. (Obligation/contract,etc)

I do miss those days. I miss having people respect my knowledge and think to ask me for my wisdom.

FYI: My mum hates it when I do this even though I think it slightly amuses her…That is to predict her questions and answer them before she has had a chance to ask.

NDIS

Published November 28, 2015 by helentastic67

IMG_2117

NDIS

Some people are generally concerned the NDIS won’t help them. I have some concerns as for the 8-9 years I’ve had my more severe symptoms of my disability, I’ve been told by everyone I speak to that, the NDIS will help me!

So the NDIS has been like a light at the end of the tunnel. A promise, if you like that things/life will get easier. Because I’ve had no funding, I’ve had to do things that my carers have told me is tragic/sad so I can still enjoy the good things in life.

So, this is a good tip for all those people who have had funding and have been able to be comfortable with life. And who are now looking at having my reality.

The classic cup of tea.

You get 2 teabags and 3 mugs, you heard me!

Your first 2 cups of tea I recommend don’t make them so strong the teaspoon can stand up in and put both teabags into the third mug for your third cup of tea.

If you do it properly the third cup of tea, will be just as good as the two proceeding.

I like my tea strong with a tiny teaspoon of mild so it looks more like coffee, with just a smidge of sugar…

If I plan it just right I have that third cup of tea in the morning when any tea will do and you ain’t so fussy.

For me the little things have been important…

So after years of crappy housemates I prioritize living alone, I prioritize not living so far from the city.

I still prioritize eating, turning the light on and occasionally, I have someone walk into a room and announce that the NDIS won’t help them at all.

So I asked this woman “What do you mean?”

She repeated her first statement like that helped at all…………

God help me!

So I decided to unpack it for her…………

I informed her, she would still get her pension from Centrelink. It would not be one or the other.

Then I questioned her.

“Do you need any carers to live your life?”

“No.”

“Do you need any support?”

“No.”

“You don’t pay rent?”

I’m not sure I asked this but I presume her father doesn’t charge her rent.

“And you work right?”

She said she could work more, but her neuropsych stated she was unable.

And finally I put my old hat on from my days working for the NGO…..

Her next answer surprised me.

“Well I’ve got the investment property in Brunswick.”

To which I informed her the NDIS was not for her!

2.30am

Published November 28, 2015 by helentastic67

2.30am

2.30am

There’s a really shitty thing about having a disability, there’s not lots of ‘good things that happen in your life. It’s just more shit things in varying degrees of more shit.

It’s not that I’m always being negative, it’s just really hard to put a positive spin on ‘shit!’

Example; A few weeks ago I had a review for my application for Public Housing. And it seemed that all of a sudden I might not even be eligible because I earn too much! WHAT THE FUDGE???

It seems I earn $12.30 too much per week. I’m not wealthy by any stretch of the imagination. I pay my rent, I pay my bills and I get no funding. I go shopping and while I’m not extravagant I’ve started to do what I call the ‘Povo-shop’ which is to only buy the things on the shopping list and to watch the total at the register with my heart in my throat.

So you can see it’s hard to sugar coat it! It’s hard to put a positive spin on living day to day this way.

And then often friends don’t know how to respond. Trust me, I know it’s horrible, which is why I mostly don’t say anything, but if I say something, I’m not telling you so will offer to fix my problems. I don’t know what would fix my problems.

Please just have some empathy.

It looks like this; don’t say nothing, say something. It might be something really simple like this:

“I’m really sorry, it sucks! I didn’t know it was that bad, let me know if I can do anything…..”

Just so you know, I rarely ask for help, so don’t be afraid I’ll call on you for anything but a chat…

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