Advocacy

All posts tagged Advocacy

Advocacy 101

Published June 28, 2021 by helentastic67

Advocacy 101

So today I thought I’d give you some context for HellOnWheels, and why I blog.

After being part of a self-advocacy group for over 8 years, it would seem as different faces come and go, I still needed to explain to people who I am and what I’m on about.

And basically, why I deserve to have opinions so it would seem.

I asked and offered a blog post to contribute to a newsletter that has been rebooted by a lovely volunteer. So, I was surprised to find my blog contribution still not being included.

I had to ask numerous times. I do have a tendency to follow up and not let things go until I get answers. I think with kids it would be considered ‘pester power!’, but I am not a child nor do I want any.

I was told after someone read one of my posts that “Oh she’s got strong opinions.”

And that was why.

So, this is my explaining why I deserve to have the opinions I have.

Hot off the Press – 15th June 2021

Published June 15, 2021 by helentastic67

Hot off the Press

Change does not come easy.

So, I guess my posts these days have become more of a Hot Off the Press edition. Today, I’m writing on a Friday morning and every day this week I’ve been needing the pennies to stop dropping if you feel me.

There is just something fucking new every frigging day, I’m up to pussy’s bow, the end of my rope, not sure my nerves will cope with much more.

You may be aware, earlier this year I may have mentioned my shrink (makes me sound crazier). My psychologist is wanting to retire. WHAT? I know.

She’s mentioned for a while now, over more recent years and I’ve been in denial, obviously at some point she decided she was more and more serious and in 2021, it’s happened. She’s winding down. Very sad face!

You see, I’ve been seeing her for 13 years, I know, still not fixed (That’s a mental health joke!). I tried to entice her to stay, but I haven’t unpacked my baggage from my teenage years yet. I think we all know I have, but she could not be encouraged to work forever.

I asked if I could have half my money back, as I’ve got to start again with someone new.

Anyway, this week I found out why I’ve been unable to nail down my Support Co-coordinator (fancy name for a case manager). I’d been told she was sick, I now also imagine she’s been doing a job trial for her new job, because she’s leaving. Meanwhile, I don’t know if my new shoes have been paid for? Well, they haven’t and I guess now, I’m making sure all the wheels are turning.

Because the NDIA makes sure everyone else gets paid, even if they haven’t been doing their jobs. So, of course I started making calls. Like I don’t have enough to do already? FFS!

Have been meaning to do this blog post for days and yesterday I realized why I hadn’t, all the pennies had yet to drop.

Thursday, found out I’m also getting a new Occupational Therapist (OT). Are you breaking up with me too? So yes. She did too. I’d only had this OT a few months as I’d finally kicked the last rubbish OT to the curb.

2020 is still kicking me in the pants and I’m over having to rehash all the things. FFS!

I need a cheat sheet!

Wednesday, I heard (got a text!), I’m at 81% of my year’s funding and it ends in December. So, I need a review and my support coordinator better bring her A-game.

The NDIA like to give you just enough funding to cover you for 10 months of the year and then you have to go beg for more, by which time they have moved the goal posts to mean you can’t have what you previously had. I also heard the NDIA has trialed a new ‘thing’, it’s called Personas (Independent assessment) and an algorithm.

It’s just a funny way to put us all in little boxes as if we need the same things. We will all hurry the fuck up and go do study, or just get a job and not be a drain on the Australian government. It’s like they realized people with disabilities deserve a normal life and things and human rights. Until they realized how expensive having ethics is. Then they’ve tried to take out the human element so they can be more economized.

Advocacy never ends does it.

On the upside, Smith Street in Collingwood was voted the best street in the world! Voted by the editors of Smith Street has been named the coolest street in the world (timeout.com)


I got to catch up with Noelle last night by phone. I’ve started calling her every few weeks to chat. We were commiserating over how bitterly cold it got all of a sudden. Winter has hit. And Melbourne has come out of lockdown 4.0. We still need to wear masks and Noelle is in Sydney and they do not.

So, I just tease her at least we have heaters in Melbourne. They had their coldest day on record in 37 years yesterday and the rivalry continues between Sydney and Melbourne.

We still have better coffee, art and street culture. I mean they don’t even have a National Gallery, it’s in Canberra. WT Firetruck!? (Trying to swear less, is it working?)

We have the MCG and the laneway street art; Melbourne has all these things. Just saying.

Trying to end on an upbeat.

Today’s Lunch – 16th October 2019

Published October 16, 2019 by helentastic67

Today’s Lunch

Good Mental Health Day

Is it really only Hump Day? No, it’s gotta be Friday? I didn’t even have to do Person on Monday. However, it’s Tuesday evening as I tap out this post (I save this as a draft and add the important lunch details on Wednesday before I email it to Ms Noelle, my trusted administrator)

So, today I’m in Flemington at the Advisory group I’ve joined. It’s good to stretch my advocacy efforts. Also means I widen the networking. This meeting is only my second with them and it’s every 3 months.

So, lunch today is a little different, occasionally shit goes sideways and I’m a week early for a meeting and I’m left feeling like I got stood up for a second date!

So, medicine with white sugar! WTF people! Good coffee needs raw sugar.

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

Advocacy

Published October 5, 2018 by helentastic67

Advocacy

Advocacy

Someone gave me the most brilliant analogy for advocacy and the success felt when achieving anything major.

Advocacy success

For example, I’m currently wearing my new shoes and have been for about a month. The shoes are referred to as Custom, not custom by NDIS.

New Shoes

They weren’t made by hand to specifically fit my feet, but you get fitted in the shop and there are layers in the bottom of the shoe that come out to make room for my AFO (Ankle, Foot Orthotics) and the overall effect is, I can walk better, my AFO does what it’s designed to do, my hips won’t be uneven and the most important thing is, I won’t need a knee replacement one day, because I have a habit of hyper-extending my knee.

AFO 1

The shoes actually come from the States (as in America) and are the most expensive shoes I’ve ever owned. They are not yet PAID FOR.

Expensive shoes

I know, sounds ridiculous that I’m currently wearing $350.00 pair of shoes that weren’t paid for by the NDIA (National Disability Insurance Agency – who manage and deliver the scheme)

NDIS

So, the analogy I was given (no, I didn’t forget) was that Advocacy is like trying to climb Mount Everest. Then her advice was to stay at Base Camp. I suggested that was likely wise, since the air is thicker there.

Mt Everest

Hot off the Press – 28th August 2017

Published August 28, 2017 by helentastic67

Hot off the Press 2808

Really needing this week to be far less busy and chaotic. Noelle informed me last week’s Press Release was akin to a short story. So, let’s put out for much less chaos.

Monday dawned cold and wet so decided I’m too poor to pay for taxis to my only appointment so I reconsidered and cancelled. Had an extra day to my weekend and did some advocacy for a friend who has had the NDIS fail him so badly he has rejected the help completely. He also has no case manager and no carers. He obviously needs an advocate and a new planner from the NDIS so I’ll work on advocating for him to get those next.

Cold weather

Ironically, if I do a little advocacy for others I’m heard and they get results however when I do it for myself there is a consensus that I don’t need to be taken seriously because I just have a brain injury! Apparently, I don’t matter.

God forbid! A client is smart enough to know when I’m being given sub-standard service and wise enough to make you feel some guilt about it. One of us is being paid for living like this and it’s not me!

So, back to less chaos.

Made it to 4.30pm and decided I really did deserve a kip……….woke at 6.30, barely in time to fit in a coffee. Back to emails, which are never ending……and felt the need to give a smack down to someone in my ABI community.

Brain injury

The biggest problem with brain injury is often that as it is something we have in common we are presumed to be herded together to socialise and advocate. Not a single ABI is like another. Everyone has different funding, supports, support needs and empathy and compassion for anyone and everyone else. Housing situation, family, etc etc.

I have really stepped back from all ABI groups and last week’s art project was a rarity on my behalf. So, after attempting to explain to another in this community I eventually repeated and delivered a sharp “Go forth and multiply!” Although not as eloquently as that…….next!

FYI; False alarm in the finale of GOT. I am a week early meaning I now must wait in anticipation like everyone else. I don’t know if you are aware, however I don’t have patience for all things.

GOT

Tuesday! myo/Remedial! So, needed that. The student worked on my back and both my arms, and when working on my left arm was surprised when my left hand flared open.

Wednesday! Remember my suggestion for needing a less dramatic week? Yeah, well……..
T, a good friend scooped me up in time to get to see what I hope will be my new home. T, helped do the application forms and after a short trip to the police station to sign a statutory declaration, a drive to the city to drop the forms straight to the real estate agent. I even did a flight of stairs! Up and down.

Appartment hunting

After my initial feedback that they had an accessibility issue, I left her by telling her if I got down the stairs my application should go to the top of the pile, if I fell? I should get the apartment! (She got my humour) As I got in the car I could feel muscles in both my legs I don’t recall ever having.
After being delivered to my fav lunch haunt and no time to smash out my foodie post, apologies. Hope you appreciated the extra well thought out /structured post? Inhaled lunch, something different ironically. Delicious pancetta quiche with side salad. And the standard medicine………..
And then off to Chiropractor!

GOT 1

Quick debrief with the younger Associate Chiro on GOT! I peaked too early and binged the first six episodes of the season a whole week before the season finale, meaning I have had to wait on tender-hooks like all the other plebs! My debrief with him was had with me, wide eyed, raised eyebrows and very short statements. He smiled and agreed and then my Chiro broke it up with “C’mon! Quick back to work!” We parted ways me responding “Yes, Mum!” Humorously.

Chiropractors

Already had a migraine from the chaotic day. Tram, acupuncture. (Took out my own needles for efficiency) and off to the beauticians for a quick underarm wax! Taxi home and chores, chores and more chores. Turned out to be a great day for ducks! (it is standard end of winter/start of spring rainy season)

Thursday, now this is the ticket! Very quiet day at home. So happy, with sore legs from doing those stairs Wednesday, but still happy days!

Thursday

Friday, before lunch, had sheets on the line already! In Winter (well, practically spring in Melbourne!) Then received the hideous news, I didn’t get the apartment I applied for. Apparently, the winning applicant could take possession on Monday. While I’m yet to give notice as I can’t afford to be homeless and cannot do transitional housing. I would have scrambled to get funding to pay rent on the new place while I gave notice here. This is the 3rd place in as many months I’ve applied for that I didn’t get. My new fur-child again not here. Feeling like a loser! Had my young carer who does my shopping, homecare and food prep and had plenty of laughs to cheer me.

Friday

Huge laundry weekend and at least one decent day to get through it all. Happy to be off grid as of right now, being midnight! And looking forward to getting shrunk Monday!

Off-grid Saturday as quiet as it should be, single girl date night again spent consuming the build-up of shows on my Toppy. Princess Diana has been very well covered in recent weeks. Some shed a few tears, obviously, other distractions. No complaints at all. Just going to be a challenge to snap back into full Adult mode for Monday! It looks like I’ll be doing it with a twinge of a migraine. Super!

off the grid
Only managed to read three comics last week, believe there is another Joss Whedon comic to add to my shopping list. That being Dollhouse. I’m sure it can wait until I’m a little more caught up. I imagine comics are a more affordable medium than producing TV series that may or may not be green-lit for future seasons.

The finale of season 7 of GOT (Game of Thrones) airs tonight. I will watch it later Monday! Woe is me! I know my followers likely don’t understand the appeal of GOT so I promise one day I will attempt to explain. But not now.

GOT game over

To another stress-free week.
Cheers,
H

Stress free week

Week So Far!

Published October 21, 2016 by helentastic67

Week so far

Week So Far!

Monday went to a DDAC (Darebin Disability Advisory Committee) meeting as a BIM member (sorry Brain Injury Matters) and a local resident. As have recently participated in some training (VATT) Voice at the Table Training so I can attend meetings and have my opinion be heard and valued. Rather than just being a token member with a disability.

I’d be happy to go to a meeting and not feel inclined to go to a meeting and find myself facilitating. Impossible!

Board Meeting

They asked me to be a member of the DDAC! There were some ‘Service Providers’ at the meeting who are obviously concerned they won’t have a job when the NDIS (National Disability Insurance Scheme in case you missed it), gets rolled out across the North/East of Melbourne.

They like to ‘bang on’ about being there for their clients who have little independent living skills or might be intellectually handicapped, but it take me to tell that person she needs to change ‘hats’ when she’s at those meetings. She needs to put on her ‘Advocacy-Hat!’ and not be wearing her ‘Self Advocacy hat!’

advocacy-hat

People seem to go to those meetings with their ‘problems’ and there never seems to be a sharing of how to ‘problem solve’ these issues.

People don’t know how to solve them or who to go to, to fix said problems.

Anyway, left DDAC and went to have 2nd x-ray to find out what’s causing pins and needles in my right hand.

FYI That’s my good hand!

hand-x-ray

X-ray of the day was of my ‘upper back/spine/right shoulder’ (Note: despite having to go up a flight of stairs they couldn’t do the lower back x-ray at the same time. Had to book to go back Tuesday.

Had planned to ‘smash out’ the last Episode of Walking/talking Dead before Chiropractors.

Rang Darebin HACC (Home and Community Care) to arrange a Carer so I could get to 3rd x-ray and spent the next hour being bullied because people can’t read the DAMN FILE!!!

Got a migraine and was in bed by 11.30pm. When I’m in bed that early for the night, you need to consider ‘Will Helen Wake Up Dead??’

So it’s now Wednesday afternoon and I’m still feeling seedy from the migraine.

Super week so far!!!

 

Advocacy

Published September 12, 2016 by helentastic67

advocacy-2

Advocacy

People don’t realise how much self-advocacy is involved in having a disability and remaining independent.

People would think I have everything in the whole damn world thrown at me because I have a disability.

However, in reality, I’m forever pushing about 5 different issues and at any given time.

You probably wouldn’t believe me but on my limited income I live in private rental. Yes this means I qualify for Rent Assistance, but it hasn’t increased since 2007 when I first qualified for my pension and while rent has continued to increase, Rent Assistance has never increased in line with the market.

The reality? THREE times I’ve moved since 2007, I’ve had to move further from my supports and comfort zone, further from the city. Let’s not forget, I have to compromise, quality of my home and size.

advocacy

(I went to an open for inspection on Saturday as I’m having to contemplate moving) and the kitchen was crappy 70’s! Not even nice or retro 70’s! We’re talking three kinds of BROWN TILE where there was already BROWN CUPBOARDS! In a really small space, I can’t do it!

I grew up in a brown 70’s house (my dad still lives there) and a BROWN SCHOOL UNIFORM. I’ve suffered enough!

NUMBER 2! My second issue I’m dealing with right now , I’m dealing with the Government and my 2nd appeal so my pension is not reduced every fortnight for the rest of my natural born life!

I’m not being melodramatic, they really want to reduce my allowance at a small amount per fortnight for the next 24 years!

Keep in mind, they harass me every 3 months threatening to take a significantly larger portion that would see me not pay my rent or eat!

Also keep in mind, I’ve previously stated eat Salami to shorten my life and if this keeps up I won’t be able to afford Salami either.

Perhaps, if I’m feeling a Part 2 to this, so stay tuned….. NEXT!!!!

advocacy-1

Dear God

Published July 29, 2016 by helentastic67

 

stumbling_block_-_how_much

Dear God!

Dear God! And I could say ‘Dear Fred!’ but that might be confusing. Sometimes when life is too hard and you have thrown me one too many hurdles in life and I can’t take it anymore. And all I can do to make my point is to hold people to ransom until I am heard and someone helps me!

Anyway, this was not how I wanted my next post to start, but it seems the best way to tackle the topic of some ‘shit’ that went down today.

Some people may think my disability is not as bad as theirs or be irrelevant because it’s just a brain injury! Or because I don’t seem physically challenged by my disability! So to explain;

Monday, I found a new ‘fucked-up’ way to pull muscles in my back and all I was trying to do was lie down on a massage table face down! Yes! Really!

While I do manage to get out to appointments one way or another and I manage to get myself home usually in one piece, it comes at a price and can take its toll and definitely more of this “shit” later because right now this is not my point.

I still need to advocate for myself at times and when I’m smart enough to know I’m getting a raw deal from my ‘Service Provider’ and they should be doing better. I dread to think how they treat others and that’s when people like you ‘God!’ don’t have the ability to cope as well.

This is why I advocate for people with A.B.I’s.

Today, while at a Brain Injury Self Advocacy Group’s monthly committee meeting one of our new members ‘Fred’ (we will call him) burst into the room just as we were finishing.

Let me premise this by saying; Fred was having a much shittier day than I was up until that point and his multiple A.B.I’s proving to be far worse than mine. He was very angry and had been to court, hence missing the meeting.

He blasted us with random facts about his situation that we obviously needed to know. But, for all his many issues we work largely as a referral/networking service and while we tried to recommend some Advocacy groups. He told us they had been less than helpful and that is me paraphrasing what he actually had to say about them. What he should have said was they had been less than helpful to him and I imagine if he dealt with all his situations and troubles in life the same way, he informed us today that we were not of much use to him.

After about 15 minutes of dealing with Fred’s fury, I had to leave because I started to feel sick. I really respect Russell Brand when he has been known to say;

“I don’t have a drug problem; I have a dealing with life problem!”

And that is the problem with Mental Health and that is when dealing with Chronic Medical and Health issues, the thing, the thing & the thing that lead to the serious mental health issues it’s hard to cope with the shit that happens and how to deal with them, so the already fragile mental health doesn’t get worse.

Now lastly, I don’t know that everyone followed this post and while the intention, the meaning and the conclusion, my point or at least a little out of it.

Now for a cuppa T.

stumbling

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