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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

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Hot off the Press – 21st August 2017

Published August 21, 2017 by helentastic67

Hot off the Press 2108

Hot off the Press

This week comes with an explanation, I guess. I write this post throughout the week and save it in my drafts folder in my email so I cannot miss stuff. Each day seems to bring lots of little details that are important and shouldn’t be neglected! So, enjoy.

Monday, had intended to go to the city and see a friend’s art instillation of handstands in the Arts Centre. A woman with a brain injury who is an artist and she does screen printing and a series of stickers of her doing handstands. She does her handstands to relieve stress and pain from her injuries. Having her work on display in the Arts Centre in Melbourne is an achievement in itself.
I have been trying to go see it for a month or more now and I don’t want to miss it. I try to get to all her exhibitions………..but I prefer company.

Art Centre

I had put out for a carer to accompany me so I could also pick up some things in the city and have my carer carry them. My disc bulge I had surgery to in 2011 has been giving me some warning that I should avoid lifting heavy things, or light things for that matter.

One of my agencies was more concerned I would injure my carer by carrying something heavy. I don’t know what she thought I had been intending to buy. I wasn’t planning on buying bricks or anything……… They couldn’t find a carer, so I changed my mind and had a lazy day off. So much for the NDIS being Life Changing!

Tuesday! Went to the city and participated in an art project. Creating something for a projection to happen down in Warrnambool. I won’t be going but Hellonwheels will make an appearance. Yes, yes. I’ll share footage when that happens!

Warrnambool

If I were to go, watching bright flickering lights while at night would be the kind of migraine inducing thing that would not just stay at the normal level of pain I can just deal with. I don’t want to be that girl who comes home from an adventure via a hospital.

Did some walking and collected 2 of the 3 things I had needed the pack-mule for. I had to collect my 3-monthly supply of comics. Thankfully only 8 making me think I might catch up soon? What will I read then? The comics were the lightest item I was carrying.

Pack mule

Tram home and then a lengthy walk. I arrived to visit the builders down the street and called quits. Matt gave my bag a lift home and I continued much lighter still trying to get some steps on the pedometer on my phone, managed 3,500+. Not bad, right? Except, I’ve a nasty callus on the side of my left foot. I suspect caused by not having the right shoes for this AFO and being fitted by a specialist in medically approved shoes. Have I mentioned I mostly can’t feel my left foot until I hurts?
Yeah, and I wear thick socks around the house as I scuff slippers. And it hurt to walk on any surface except carpet!

Yeah, and I repeat. Not Life Changing NDIS!

Really hoping I can get a carer to get me to my Botox specialist appointment on Friday! The Botox, the hinged AFO and shoes is all related. I’m hoping my mum doesn’t need to drive a 7-hour round trip just to take me!

Botox

By the end of this post you will know the answer to that! Finally, Tuesday. Like that isn’t enough, tore a fingernail into flesh, on my left hand. You might not recall, I can’t feel my left fingers until they hurt also? I can’t cut my own nails and I’m not allowed to have my carers do it for me. I definitely can’t afford to pay someone. Yet, I can’t not! It’s never ending!

Another Wednesday arrives and while very windy I was able to scooter and leave hellonwheels on the High Street near my usual final appointment of the day. I definitely couldn’t have made much of a dent on the pedometer. Left foot is rather painful right now. Maybe I’ll finally seem like someone should fund my new shoes!

It’s ridiculous that because it seems I’m doing everything for myself and doing OK so it seems that it’s considered sustainable and therefore don’t need help. So many things hurt tonight.
Possibly not helped by the lack of Osteo, Mio/Remedial of acupuncture the last few weeks.
Have really made excuses to not go out as much because Young John is away and I rely on him so much to get me places. (he has sent me pictures of plates of figs and such, so he’s obviously suffered greatly)

And the heavy lifting I’ve found myself doing today. I rearranged some unread comics this evening and discovered I’ve been reading them out of order. Who knew there was an order? Going to have to purchase a second storage box next time I’m at the comic shop. Can’t believe I’ve become that nerdy girl who sorts her comics. Not a terrible awful thing just don’t know how this came about.

Organise

Midnight Wednesday night. OK, officially Thursday morning got the message loud and clear. No! More! Technology! It was all not working for me in one way or another.
I quit!

Thursday, blessed Thursday. No appointments today! Luckily, it allowed me another afternoon Kip! I seem to get my best sleep in the afternoon and then after I’m up, I feel I’m good to go for another good 20 minutes…..(just kidding) still not getting through the constant build-up on my couch that’s eternal.

Mum arrived nice and early around 9.30pm, for a fun-filled 24-36 hours.

Friday! Completely smashed it! Had my Botox follow-up with the specialist. Was last injected St Valentine’s Day, best St V’s gift ever, despite it being in my calf muscle. They think I’m ready for the catwalk. (Kidding)

Then, as we had time before my next appointment we had a hit and run visit to the Swedish warehouse. Ironic that that particular post went live on the same day!

Stocked up on some tea light candles. And rescued a few plants, as I do every time. Hot footed it to my orthotist about the nice callus that has been giving me grief. Steven informed me I have been his first client to get my AFO funded and paid for by the NDIS! (The portal that you must navigate is monumentally difficult to understand what it requires of you or if the funds have been allocated and approved: Sounds awfully like they didn’t do a very good job and don’t want to spend the money!)
Hint: Steven rang at 10pm and must have gotten a staff member who couldn’t wait to finish for the night, so told him exactly what he needed to do so he could get paid and the guy could go home. Apparently, the call centre is open until 10pm.

Steven stretched out the side of the AFO so no more callus.

Drove back home from Richmond (not me, mum) and arrived in time to inhale lunch as my carer arrived to do my homecare and take me shopping. Ben managed to get the missing filter for my coffee percolator. Mum and her coffee needs are now sorted to her standards for the future. She left within 24 hours of her arriving in her little racing car. My mum makes an amazingly simple meal when she is here and I got to enjoy it late. Chilli’s and chips with a fried piece of white fish and thyme with a fried egg.
Pedometer tells me the day totalled 4,800+. Imagine what I could do every day if I had NDIA funded medically approved extra depth shoes that cost more than a week’s rent?

Now for the never-ending battle of clearing my couch and being off-grid for Saturday at least! Starting now at 11.59pm!

Saturday dawned with the realisation that GOT season 7 was finishing on Sunday night and it meant I had to binge the whole of the first 6 episodes before Sunday night.

Game of Thrones

So single girl date night again meant TV and not a film and still unable to completely be off-grid.
Sunday, looking at my couch and it’s looking much better. No! You can’t see a picture.
Also, 5 comics were read this week. So happy days here!

Also considering to add another tally to mention each week. How many people ask me in the average week: What have you done to your arm? Seriously, if I had a dollar!

If I had a dollar

It’s, already Monday morning, try early and still not interested in going to bed.
Already considering the many things I have to do tomorrow. Might just smash out a few emails now to make a start…….
1.30am……..
Have a great week!
Cheers,
H

Have a great week

Hot off the Press – 24th July 2017

Published July 24, 2017 by helentastic67

Hot of the Press

Hot off the Press!

Very happy that I’ve followed through on my commitment to provide a current snapshot of Life with Hellonwheels. Going to guesstimate it’s now 2 months.

In recent weeks, I’ve attempted to make a serious commitment to get to bed early. You will already be aware I am NOT a morning person, unless it’s between 12am and 2am! So, attempting to set a realistic achievable goal of 1am, I failed every night the first week, although, if 1.04am, I consider that a win! The last four nights I’ve managed to get into bed before 1am and I can’t wait to get an eye roll from Ms Jillian tomorrow for my monthly head-check. I will get lots of steps on my pedometer to more than make up for it.

Early night

Have had a very busy week and while I usually see my lovely Young John at least three times a week, he’s off to Greece today for at least five weeks with his wife Young Betty.

Greece

As he never charges me, so I have to consider realistically which of my appointments I can live without. I now need to taxi ($$$) to appointments or rug up and walk to the tram and cater to the fact that I will get wet. I can’t use both my walking stick and an umbrella.

We are over the halfway point in winter in Melbourne but this is the wettest part of winter and the start of Spring.

Thinking to do like a bear and hibernate. Plenty of TV to watch, currently watching some Hawaii 5 Oh! To trick myself into thinking it’s not so cold. It’s not working.

Hibirnation

Oh, the start of the week saw my mum here for about 24 hours. This week both my parents celebrated their birthdays. 68 and 69, I think. Young compared to many of my friend’s parents.

Happy birthday

Visited the pet shop again to check on Ralph’s fate. He had been adopted the day before and another cat had also come and found a new home. Another to arrive that day and still no new fur-child for me. Sad face. But the trip to the pet shop revealed there will be a Cat Lounge opening in August in a neighbouring suburb. FYI: Lounge presumably is a fancy name for a cafe, in a suburb I wouldn’t consider fancy. But until I move and/or get my new fur-child I foresee myself being a regular visitor.

Fur baby

The drama of finding carers has continued. Last Monday I went to the top and sent a polite but brief text to the CEO (what? He told me I could call him!) and within an hour I received an email of my roster. So, definitely doing that again.

Still adding to the mental list of how many carers have seen me naked. The least favourite thing about having and needing carers to do the most simple and mundane of tasks. I’ve decided to cancel four of my FP (food preparation) shifts this week. I need a break from the rostering nightmare and staff changes. If I have to micromanage someone I might as well do it myself. If it’s something I can’t do one-handed it can wait.

Naked

Still no new shoes to speak of. Starting to get murderous thoughts at the powers that be ‘getting in my way’.

The NDIS is supposed to be life changing. Then why do I have blisters on my toes? Less travel assistance and I am forced to trim my own fingernails on my left hand until I butcher them as I don’t know how short I cut them until they hurt! My chiropractor put my rib back in and it was bruised for days yet, that was something my CM decided warranted an incident report to assist me getting my monthly chiropractor bill covered. Here’s hoping.

NDIS

Lastly, my anniversary White Tail Spider bite flare up has returned. So, it’s as itchy as hell and the skin peeling is about to start again.

White Tail spider

Oh, I got through three comics this week and also filed away the ones I’ve read this year. Going to need a new achieve box soon. I’ll try to read a few more comics before I make my next pilgrimage to the comic shop. I do this every three months.

Comics

To a less chaotic week ahead!
Cheers,
H

Have a great week

Irony

Published June 30, 2017 by helentastic67

Irony

Irony

I imagine Irony has taken on a whole new meaning since I’ve developed my disability and it’s going to require some explaining so hang tight and buckle in!

Buckle up

HACC Services provide my carers through State Funding. It subsidises the fees so instead of me paying $40.00 per hour, I only pay $2.00. I get a carer 3 – 4 days a week for an hour and on Fridays I have shopping or Homecare, it all starts to add up.

With the roll-out of the NDIS, the council still gets funding from that bucket of money, but because they will be expected to offer more hours to their clients, they would rather utilise that funding in other ways.

Like ‘Tourism’, apparently, I have no idea! Don’t ask!

tourism

That is another point for another day.

I digress, my council also has a DAC! Sorry, another acronym – Disability Advisory Committee.

It is very heavy on council staff, such as ‘Tourism’ and service providers. However, the irony is this: ‘My council loves people like me to go volunteer my time to share my opinion and input so they can better service their community.

A survey I participated in recently, tells me they are far more interested in not offending the LBTG community, than looking after the people with disabilities and when I say that I’m not meaning any disrespect to Gays (love them) Lesbians (Thespians as I like to call them), bi-sexual (yeah, I know, you just love people to work it out and when you decide, let me know), Transgenders.

LGBT

Be brave! Be who you want to be (anyone else has another opinion, you should do what’s right for you and let everyone else do what’s right for them)

Hope I adequately explain my opinion, quickly and succinctly on all those topics!

The bottom line is I don’t have time to give my time for meaningless surveys.

Survey

T-birds and Purple Trees

Published May 19, 2017 by helentastic67

Thunderbirds

T-Birds and Purple Trees

T-Birds and Purple trees! My Case Manager told me to quote that when I have my NDIS assessment tomorrow. He suggests it emphasises my (how best to say it?) “Numpty-ness?”

Purple tree

He rang me a week ago and asked what I was up to and I was quite literal as I was reading a post from one of the bloggers I follow. The post was about T-Birds (Thunderbirds the car) and a beautiful purple tree that was about to be cut up. One of my followers will recognise this from her blog.

My point being, sometimes I’ve got to get my “Crazy” on! Because I manage to appear so competent, I almost self-sabotage and I don’t mean to.

Crazy lady

I am competent in many, many ways, but it doesn’t change the fact that physically I struggle and the things I manage to do all comes at a cost.

I mean, try peeling a carrot one-handed. That should be today’s challenge.

I promise you it’s do-able. It’s just such a complete “brain fuck” if you manage it you will need a good stiff drink afterwards and I need a lie down.

Brain fuck

Fingers crossed I don’t have to get the “Crazy” out too much tomorrow. That also requires a lie down because I really hate having to dumb myself down.

I am my best advocate, but if I do it a little too well, I shoot myself in the foot.

Ridiculous!

Ridiculous

Who You Gonna Call?

Published May 10, 2017 by helentastic67

ghostbusters_who_you_gonna_call

Who Can You Call

No, it’s not Ghostbusters, if you’re feeling down, who could you really call if you need talking off a ledge? If you were to really think about it, I have both parents still. Not complaining, they are still around and I have two sisters, an older, who lives an hour away and a younger sister who lives with our mum again, 3 ½ hours away.

My older sister, I won’t even send a Facebook request because it would hang in limbo.

My mum and younger sister, I can’t call when Masterchef is on, or Survivor, or even Bachelor. I can’t call before midday and I can’t call certain days of the week after 7pm. They work odd hours and sleep worse hours than me and there seems to be an all-round they don’t want to hear from me, so I don’t bother.

Masterchef

Had a call with mum today with my Case Manager here and the call went surprisingly well. I was eating my breakfast at the time so had to be very patient. We were collectively discussing my application for the NDIS. Occasionally when my mum got distracted by the “problems” and couldn’t get to a solution, I found my words.

Phone conversation

I finished the call with my usual sign-off “Love you and leave you” and my mum gave me the phone equivalent of a “whatever”.

Hanging up I shared a moment with my Case Manager that he understood my pain and yet, if I need “talking off a ledge” my mum would want to hear from me.

My advice to anyone, if you’re feeling down, if you’re having a hard time call someone.

Feeling down

Don’t do anything stupid, just call someone. Start a conversation and if you’re that person someone calls and you don’t know what to say? Just say something.

Sometimes, it’s OK if you don’t know what to say, just talk, give them company.

Having said all of that, there is a rare evening the phone rings after midnight and I laugh when I answer. She asks “is it too late?”

I laugh again.

It’s often a very prompt, matter of fact call. Which is fine.

By that time, I’m trying to wind down and arguments don’t help.

Midnight call

NDIS – Life Changer

Published March 22, 2017 by helentastic67

NDIS Life changer 1

The NDIS is supposed to be Life-Changing!
Right?

So, today I paid my scooter insurance because the NDIS refuse to pay any insurance.
I’ve tried every which way to have someone other than me pay it.

And I’ve been getting calls from the insurance broker. Seriously missed his calling as a debt collector.

He could change careers but I gather he is an ‘older’ gentleman.

So, to make a point of why I struggle to pay my rent? I paid my insurance. Out of my rent!

Thanks NDIS!
Life changing my ASS!

Ndis Life changer 2

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