NDIS Rocky Road 3

Published February 29, 2016 by helentastic67

Invisible disability 1

NDIS It’s going to be a rocky road!

I’m giving a shout out to the lovely Monroe who works for my local council in the Aged & Disability service team. And I’m doing so for two reasons.

  1. He has bothered to read my blog!
  2. He is interested in my opinion of the upcoming NDIS.

This is my answer.

Some years ago, I was at a meeting with other leaders and advocates in my sector who were being asked some serious questions about the NDIS. Grassroots stuff.

Questions like, how quickly could people be covered by the NDIS? When they moved to an area/or even came to this country. (Couldn’t fathom they hadn’t worked these ones out without our help, however)

Obviously, they were really concerned people would flock to the pilot regions to get on board early. In Victoria the pilot region has been the Barwon District which is Geelong.

That of course would put more pressure on other services already in place. Service providers, HACC services, public housing, affordable private rental, etc, etc. Service providers have also moved into those area’s to cash-in on the ‘new’ business.

A year and a half later I was at a conference and service providers in attendance were saying the opposite was happening. People were actually relocating out of the area because they had decided “it was too hard!” They did however get to take their “funding” with them.

So I guess, I have many opinions about it already and this is just a start.

I’m going to be bold and say it will succeed and everyone with a disability will be taken care of however I’ll say that it’s been a long time coming and it will take time to perfect.

The changes I’ve noticed over the years leading up to its launch and it’s the level of disability I have now compared to 8 years ago,include the moving around of service providers funding and financial assistance. I suggest that funding I was once able to call on for say, seeing a private dentist of my choice has gone to other areas. And when I get the NDIS I will be choosing to return to those private businesses, rather than going public and wondering about the quality of the services I’m receiving.

I think the government don’t yet know what it will cost to fully implement the NDIS. I think staff, carers, whoever will be the NDIS will end up looking very different to what they think it Is going to look like. It’s going to be, or should be fluid until they get it sorted.

Right now there are many service providers struggling to find and keep their places in the industry because everyone is waiting for the NDIS to “fix all the problems”. No one wants to spend their own money and they expect their clients already in the system to wait for this big bandaid.

I have a great analogy for what this currently looks like on the ground, but it will have to wait. I have been hearing about this miracle the NDIS for about 9 years and it’s been like a white light at the end of the tunnel. And on the downside, I’ve had pretty shitty Case Management who dragged their feet on applying for a Package of Funding from DHS because they said it would never be approved for payment. Therefore, the felt the success rate did not warrant their effort.

You know the answers you get for the questions you never ask? No! So you might as well ask. Is what I say!

Think of all the things you need and just ASK for it! I don’t think they will be advertising all the things that might be covered by the NDIS, because they will be trying to save money.  So I will suggest Networking & sharing information is going to be vital. Listen to what other users/consumers are applying for, you might be surprised. If it’s relevant for you apply for it also. And then tell your friends.

Lastly, I think there will be more control for us to choose who provides our services & sometimes competition is a good thing. It means those providers with bad history of poor case management will not survive.

To be continued for sure…

Jamima

Published February 29, 2016 by helentastic67

Jamima

Meet Jamima ‘Patch the Pirate Cat’ Puddleduck!
So called for my patchy left eye & my pen chance for sitting on shoulders(until Uncle B comes along, his shoulder h helps me get higher)
I’m the mental Healthcare Provider for a Crazy Cat-Lady. Housemates, boyfriends & even Uncle B have come & gone but my Mum keeps up with the Tuesday Tummy Rub’s!

Stay Tuned……….

BIM goes to the 2014 Disability Sector Awards

Published February 23, 2016 by helentastic67

 

Disability awardsFinally it pays off to have an ABI and a disability – I got to meet Tim Ferguson again!

At the recent Disability Sector Awards some of us at the BIM office had the pleasure to meet Tim Ferguson. Some of you will know him as the comedian who has MS. I understand he managed to avoid disclosing this for many years. You may also know him for his years with the Doug Anthony All Stars alongside Paul McDermott. Tim Ferguson has a book out which I recommend you to read. I wish I could read it, but I will recommend it all the same.

To his credit, it must be really challenging to be a public figure where everyone knows you have a medical condition. At our meeting he was obviously at a disadvantage because he didn’t know what our disabilities were. He could have worked out that we had brain injuries, however that’s not really narrowing it down very much.

I find people who know about ABI think that I have had a stroke, which is not the case. In some circumstances I introduce myself as “A High Functioning ABI’ but that is still not saying what my ABI is.

So my point is that ABI covers a wide range of causes and consequences and that even in a community of people with ABI or disabilities, it is not always easy to ask ‘what exactly is your disability?’

(I often see the comedian Frank Woodley in my local shopping centre and I think my facial expression gives me away as very excited to see him. I am told that he is quite happy to talk to people. Unfortunately, when I see him, I blink and he is gone. Frank is obviously unaware that I am well known for saying ‘I cannot do stalker or stealth!”)

So I tip my proverbial hat to Tim Ferguson who puts himself out there and is happy to answer well meaning but naive questions without suggesting that we buy his book!

Now I want to write my own book and start charging my Helen Tax for all those repeated questions that I get asked. For example:

What happened to your arm? (That’s $2)

What’s an AVM? (That’s another $2)

Will it get better (That’s $5 and also the ‘Million dollar question’)

Do you regret it?

Can you sue the doctors?

Do you have a husband?

Do you have children?

The list goes on, so I suggest you stay tuned for the answers!

Meanwhile, congratulations to BIM for the recognition for a job well done!

10 Types of Realities People Live In

Published February 22, 2016 by helentastic67

Which one are you?

svetik7flowers's avatarPsychology Meow

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I’ve decided to share with you the different realities you could be living in right now. I gathered them here so that you could also maybe understand someone else’s reality and relate to them better…

  1. Autopilot

This is everyone’s go-to reality, and as you might have already guessed the most common one people live in. Unfortunately, not only is this reality boring and mundane, it’s also dissatisfying so most people experience a mediocre, deficient existence while staying here. However, I’m not trying to say autopilot should not exist, because the “do what has to be done” attitude that people living here have is at the core of the clutter clearing our brain needs in order to function. We simply would go insane without the autopilot because our brain would be overloaded with information! This reality is the key to helping us forget the petty details of our monotone daily routine.

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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.

Piss or Blood

Published January 29, 2016 by helentastic67

Piss or blood 2

Piss or Blood

I recently, (again!) had another handover from one Case Manager to another.

She was a good Case Manager, but she had been dragging her feet a little on my “goals” and it became obvious when there was a ‘new’ Case Manger and that she had been looking for work closer to home because she had a young daughter in Day care and she traveled an hour or so daily to get into Melbourne…

I’m quite over the process of getting a new Case Manager. I like to befriend them so they better understand who I am and what I’m about, so they can appreciate how much I do for myself and the importance of what I do actually ask of them. I like to treat them like my friends because I do want the best from them.

Anyway, I digress – On the last meeting the outgoing Case Manager was busy checking her phone.

She explained, she was concerned for a call from their Day care provider.

And she used the term ‘Piss or Blood!’

I look at my new Case Manager, a young fellow whom I like already. He refers to me as his favourite client, so he gets a K.P.I. ‘tick’ already.

This “Piss or Blood” comment needed explaining, so it goes like this:

If she gets a call and her daughter has had an “accident” that requires a change of underwear in the scheme of things it’s not a big thing. If there’s blood, that’s more worrying. But this is not yet the point.

So, there was once a time I would speak to my mum every day.

I don’t have family close by and I live alone. When I didn’t live alone, my housemates did my head ‘in’ and despite the extra expense of living alone, the upside to living alone are many…. To be continued.

I now only call home if I want or need something or something has gone particularly badly and I need some reassurance of how to fix it, because by that stage maybe simple decisions are beyond me.

But that doesn’t mean I get a timely response. If I call, text, email, please don’t ignore me. I shouldn’t need to tell you why for you to prioritize how swiftly to respond. Just do.

If I’m having a really shitty day with my mental health, I may not call you. I may send a cheeky emoji to a person not remotely related to me because they will respond and I won’t feel like I’m going through the “Blood” alone and no one cares.

It’s a really ordinary feeling to feel you are alone in the world.

Beware the Signs of Toxic People in Your Life

Published January 27, 2016 by helentastic67

gentlekindness's avatarGentleKindness

Beware of people who say or imply things like this…

They know you better than you know yourself

They know what is best for you better than you do

You cannot make choices for yourself because you do not make the choices they want

They are doing something that hurts you for your own good

They have to control you for your own good

You don’t know what is best for you

You can’t do things (are not good enough to do them) that you think or know you can do

You won’t be successful at something 9because you are not good enough) you think or know you can be successful at

You are selfish for prioritizing things that you need to prioritize

You are selfish when you do something that is exactly what they do

You have to give up doing things you love because it is interfering with…

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Original Helen/New Helen

Published January 18, 2016 by helentastic67

old & new Helen

Original Helen/New Helen

 

Once upon a time, Helen worked in clubs! Actually it was all of my 20’s! And when I say ‘worked’ I mean I kept myself busy for drink cards, CD’s and pocket money.

I guess my 20’s was an era I had started discovering great music, friendly people and a way to go out and have fun and I had an excuse to break through the shyness.

Hear me when I say I was the most clean living person there! With the possible exception of eating meat and wearing leather! I barely drank, didn’t smoke and didn’t do drugs!

And really, your 20’s. I was still working out what I wanted to be when I grew up. I still am…

But I do like to be busy…

So, once upon a time, one of my promoters came up to me telling me his very pretty female friends were being ‘hit!’ By some seriously drunk guy!

I poised on the “suggestion” to security to remove this offensive human being. The security guy looked at me like what was he supposed to do about it?

Frustrated I let the situation ride for a little.

My promoter again reported the offensive behaviour was continuing…

Lesson #1 Here is; “sometimes the best fuck off line in a club is “FUCK OFF!” I’m just saying…

Lesson #2 I took care of my people and sometimes I did so rather, creatively because I looked after my people for the enjoyment of all our regulars and I suspect the people I worked for might have been a little grumpy about what I did, I imagine they were happy they got their cover charge and he was so drunk and he probably shouldn’t have been let in or served further alcohol…

So, here’s what I did;

I went up to this guy and said ‘hello’ I’m pretty sure I introduced myself and definitely certain he would not remember it because he was smashed… He spoke to me and I could barely understand a word he said. I took his hand and asked if he was there with friends or had a bag or jacket with him? He kept mumbling the same thing.

Finally worked out what he said “Hi! My name’s Simon! I just want to be with you!”

I took him by the hand and led him down the stairs.

Occasionally he tugged at my hand and I looked back to work out what was keeping him…

There were 4 flights of stairs. He kept stopping to chug back a beer…

WTF Simon! What good would he have been to me anyway?

Once down on the ground floor I walked him to the door. At the top of the last 3 steps the new security guy stood looking up at me….

I told Simon to go down the steps and wait.

What? He was too drunk to know I wasn’t going to follow…. And didn’t…

The security took his drink off him as is the law. The club exited onto an alley way off a laneway…

I told the security guy not to let him back in. Simon apparently returned several times with discarded bank ATM receipts and all kinds of rubbish try to get back in…

The following Friday night I worked reception for a different crowd and the same security guy was on.

He gave me the best compliment I have ever received!

He told me “That’s what clubs need. Some hot chick who just takes guys by the hand and walk them out.”

I was so underpaid at that job!

And despite it being a great story when you go for a ‘real job’ interview this is not the kind of story they want to hear, when giving an example of when you ‘took initiative’ at work. To which I never did.

Stay tuned for more stories about Original Helen!

 

The Wise One

Published January 13, 2016 by helentastic67

The Wise One 1

I’m lucky I’m right handed and that’s the arm I’m left with. And that one now does a great deal. What people wouldn’t realize is that my right side does so much, it’s overworked and there are consequences to this. I get up in the morning and I have pins and needles in my good hand.

It’s very ordinary, because sometimes I get up and my hand is completely numb. I’ve been able to master still doing the things I need to do; go to the bathroom/make breakfast. When full circulation is restored my arm gets itchy.

When in public I’ve been known to ask someone who knows me to ‘please scratch my arm?’ And don’t stop unit you see blood….

They seem happy to assist until I mention blood…

Oh well!!!

Sometimes I find myself watching my cat. Cat logic is an interesting thing. Cats like to “scent” their home just like dogs do, but in different ways. I’ve noticed the places my cat likes to rub her face and I’ve discovered the edge of the kitchen pantry is just the right amount of sharpness, but not lethal to rub my arm. Often getting in a scratch in passing.

I have a friend, different original medical diagnosis, but we have ended up with similar physical deficiencies. I’ve stood talking to him in my lounge, scratching my arm on “something” an apologizing because it may have seemed I wasn’t paying attention.

He told me, not to worry, he had been so intent on scratching his own arm at home somewhere, he had managed to take a chunk out of plaster!