NDIS

All posts tagged NDIS

Tuesday

Published September 20, 2021 by helentastic67

Tuesday

Had a crazy Tuesday this week. Now it’s Friday and I’m sitting at my fave café for what has become my new normal day here to lunch and write. It’s the Covid normal.

In my early days of diagnosis, I felt the need to explain my life was less Brain Injury and more normal and my first specialist explained I was a high functioning ABI.

So, Tuesday was a bit more crazy than usual. This is probably a good example of me being high functioning. Keep in mind, Helen is not a morning person.

9:15am – Usual carer arrives for Personal Care. She does all her chores and I do mine.

I make breakfast and sit to eat. (Slam down my entrée of pills)

Turn my phone on. It starts, the bells and whistles, texts and calls and messages. I don’t know why I need to go off grid on the weekend.

I call and negotiate with my young John to get me to my first of two appointments. He can squeeze me in.

11.45am – I’m meeting my Neuro Physio. He sits on the floor trying to stretch out my left calf and front ligaments.

I have been diagnosed with a clunky ankle. It’s an official medical term. It’s causing and adding to my knee replacement one day. It’s already nice and crunchy! (My knee)

So, he’s doing him. I’m doing me. I’m checking texts, sending texts, then I’m required to stand favoring my left side and sit, twist my upper body towards my left to help my leg and foot do leg and foot. 

To be clear, all this teases my brain. It’s not super fun, because my right-side brain is saying “you want to do what? Get firetrucked!” (Trying not to swear!).

And I’m dealing with one of my two agencies to fill a shift, the following day on the Wednesday.

It’s a 6-hour shift where I get escorted out, I do the things, we have lunch either out or at home and I set them chores while I scooter out to other appointments, they don’t need to take me to. It’s also when I fit other things in where I need muscles and things that I can do by myself or on P.T.

It’s a 6-hour shift. The texts from my agency go back and forth. Eventually, I’m offered 3 hours which I later describe as like putting a band aid on a bullet wound. It’s a great image, isn’t it?

I was responding that I could offer their shift to my other agency, as in the whole shift 6 hours. What pretty band aids on either side of that 3 hour. I need the whole 6 hours.

I mention via text, I’m in the middle of something and I need to be present in my appointments, but then I get a rather long shitty text stating they had spent 4 hours messaging other carers and clients to find me someone. It sounds like they think I’m ungrateful. The grumpy text ends with an apology for the text. I am now getting busy – this is eight days after I started.

Hopefully I can do it justice. But otherwise, could be, I didn’t get to read her whole message. I got the gist and immediately texted my other agency and if the person was not in the office, I rang them directly. 

When I rang, I could even interpret the pause and inner office convo that happened in the background. A carer they have been wanting to send me for some time, they were just waiting on an NDIS checklist.

I confess it’s been two weeks since that fateful day. So, while this may not flow seamlessly from the previous post, I hope you can keep up?

So, I text the agency who is choosing to do their job the hard way, that in the middle of two appointments I need to be actively present at. I’ll get back to them.

It does already look like I’m covering the following days shift myself another way. I flick a text to my other agency. In case that staff member wasn’t in the office that day, I quickly call.

“What’s that?” I’m on the phone while my Occupational Therapist, (OT) who I’m just meeting for the first time is with me. “No, I told her she could absolutely go pee.” Respectfully, that makes us friends for life.

I call the agency and I can tell exactly the conversation that’s happening in their office.

“Oh, send X, Y, Z!”

“Is that Helen? Just fill that shift!”

There is no better motivation than me missing a specialist appointment because their afterhours staff member fucked up my Monday morning. My Botox appointment was rescheduled for two months further away. Botox keeps my left toes from curling (I know. What?). Yes! Botox in my leg.

Anyway, yes. The NDIA survey has been completed and X, Y, Z can cover my Wednesday shifts until my other agency can cover it again.

After my OT appointment, I head out and call my Heidelberg taxi driver. Young John is best at this time and so is Sean! 

I hoof it to my far local pide dealer. Pide is not code for anything. It’s just where I get my vegie pide from. Another taxi driver has arranged that I can wait around the corner to make life easier. 

On the drive home (10-15 mins) I text the first agency. I confess I was pretty grumpy earlier and wished to call my support coordinator to growl at the agency because I just didn’t have the bandwidth to give the polite diplomatic response.

Yet, I messaged something along the lines of, ‘I appreciate how hard it is to fill shifts when my regulars are away or don’t have a weekend. Then something that I genuinely did appreciate her efforts. Despite that, rather than ring me first to ask if she could wriggle things so she could cover three of the six hours of my shift. Would it be enough?

Sometimes it is but this particular day, I had placed other things in around and in between the appointments that required wheels and muscle.

I did all of this with a migraine.

So, that shift was moved for a month or so to another agency. 

The following Tuesday I received a message asking if I expected them to cover my Wednesday. I had to remind them I’d moved it temporarily. This is what happens when someone tries to cover a bullet wound with a band aid.

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.

Botox

Published March 29, 2021 by helentastic67

Botox, the Bottom Line

So here we are again, so are the days of our lives!

I’m off for my 4-6 weekly pilgrimage to my GP. He is often/usually/generally/ always my first point of call for getting stuff I need (handy hint!).

Today I’m going to be asking him to help me advocate for me to get more Botox in my leg. I know it all sounds great to put it in your face, however I think it’s a waste of money for 30-somethings to spend, in order to age slowly.

Young people! If this is you? We all age the same, we all go in the ground eventually and Botox is the most toxic thing you can put in your body. I’m just saying, don’t do it for vanity. It’s better for people who need it for medical reasons armpits, legs, arms, etc.

Now, you may imagine Helen seems to have it together when she needs stuff and she has a voice and words, so why do I need my GP for this?

Well firstly, when people want you for a trial that can give them research money and good results (Pick Helen!!). When the research is done, why didn’t you give what you promised? The hinged AFO the appropriate shoes and the overall result being not to need a knee replacement one day.

That is the bottom line for me needing Botox in my left leg. They tell me I don’t need Botox, they even tell me since I now have the correct AFO and shoes.

Yeah! Thank you NDIS (not)!

And I don’t let them forget it! They double down and tell me I don’t get sock fluff build up inside my AFO, so I mustn’t need Botox. Then they even mention I haven’t had it since 2017. Therefore, I really mustn’t need it.

Hot Off the Press – 19th May 2020

Published May 19, 2020 by helentastic67

Hot off the Press!

Sometimes, blogging about the here and now and the most important reason to blog gets lost in all the detail. So, being careful to consider someone else’s privacy.

Imagine being 29 and all you want to do is survive, to thrive, with a pre-diagnosed medical condition, you have a stroke!

Again, not my story, but a friend.

After over a month in hospital, being tested for everything including CoVid19 and with no answers. Sometimes, this is the way. No answers.

Being kept company by parents, day and night so nurses give the best care. The same care they would give to anybody without disabilities or pre-diagnosed medical conditions. No matter what they are. A short stint in in-patient rehab, where physio appointments went cancelled because of the low expectation of recovery. Parents needing to still be there to advocate for their child to make sure they get what they need.

What to do now?
Well, the hospital and the patient, to be fair want the patient discharged ASAP. The patient obviously very keen to be home where his parents can arrange the best for their child. Well, adult child and the parents could get a reasonable night’s sleep, to continue to love and care for their child as only parents can.

So, in a perfect world, a caring parent/advocate/carer applies to the NDIA for a change in circumstances, so the patient can go home. Extra carer hours can be utilised to provide adequate care in the home. Plus, some much needed respite for the parents. And sufficient physio and Occupational Therapy to return to at least the bare minimum or return to the same level of independence my friend had in the comfort of their wheelchair, not so very long ago. Is it too much to ask? Is it even possible? I guess we don’t know until my friend is in the best environment for this to happen. Which is clearly at home.

They can’t go home until these things can happen.

I don’t know about anybody else, but I don’t have the funds to pay for these kinds of things, so the NDIA, a government organisation should prioritise these things, no? Let’s see how long it takes for my friend to be able to go home.

And lastly, I’ll leave you with this great quote that I only know about because a great Aussie disability advocate used it.

Disability is seen this way………
“The soft prejudice of low expectation!”

Please share through your networks to show your support. While these stories go untold people get away with providing sub-standard care. Let no single person with a disability be left behind!

Cheers,
H

Today’s Lunch – 25th December 2019

Published December 24, 2019 by helentastic67

Today’s Lunch

Good mental health day! Or as I like to say Merry fucking Christmas!

It’s actually Tuesday right now, Christmas Eve as I tap this out. It’s a good day, I’m well-adjusted as I’ve seen my chiropractor who I won’t see now until mid-January. My girl Friday and I had fish and chips for lunch in Fairfield.

I will have a medicine later at home. I received a gift from my mum yesterday in the post and presuming it was a tree, due to its shape, I’ve left it to open tomorrow. A message late last night came from my mum stating I should open it and that it wasn’t a tree? I don’t know, you tell me? Mine is on the right, she lied didn’t she! It’s a tree!

My Christmas Tree

Mums Christmas Tree

 

 

 

 

 

 

 

 

 

 

Also, a photo of it during daylight without the lights on. I hope JD is impressed? As promised, cat-friendly. It is sitting on top of things in my living room about a metre off the ground and Mika can’t get to it, or shows little interest.

Wishing everyone a very Merry Christmas. Be safe and try not to eat too much. I received my new NDIS Plan just in time for Christmas. I’m not looking at it until Thursday and over the New Year, I need to take some time off. My first medical appointment in the new year is the 9th and all the crazy starts again.

Also, while my girl-Friday was away I had some fresh new carers, one day I was in K-Mart on an important call from a lawyer. Trying to take it seriously when I looked up and this is how my girl-Friday 2, Oh had kept herself busy……..

 

 

 

 

 

 

 

 

I don’t know how I made it through that phone call.

Lastly, a big thanks for my wonderful blog administrator Noelle for whom hellonwheels would not happen. I am lucky her husband has a thing for trying to give himself diabetes. Last week, I managed to mule some gifts their way via a friend.

And today, the 24th, I managed to mule some goodies to the States to be sent to my friend in Texas! I have a post to write about to gift for appropriating people to mule things for me.

Also, Many thanks for my 200+ followers, for comments from close and far. Hope to see you in 2020!

Rest! Replenish and see you back for more in 2020!

Cheers,
H

Bucket of Funding – How to Stem the Flow

Published December 23, 2019 by helentastic67

Bucket of Funding – How to Stem the Flow

Today, I thought I’d give you all a lesson on how to over promise and under deliver and do it in a way that your clients, if you are lucky, will be slow enough not to realise for a little while.

Big business can’t work this way, they would be bankrupt. But this is how governments seem to work because ours at least, is not want the bucket of water to empty too quickly.

When I talk about funding for people with disabilities, there is always talk about State V Federal funding and it’s all about a different bucket of funding.

What they promise is a huge bucket of funding, when they start to deliver on what has been promised. Big bucket with a huge hole in the bottom.

Here’s a life lesson by example:

When the NDIS was piloted in a region in every state of Australia, it was out with everyone having an appointment (assessment) with the NDIA directly.

There was not much (if any) information about where the pilot regions would be, because they worried people would move there and flood those areas (causing a false economy etc) No one knew, what they could ask for from the NDIA, as they seemed to be making it up as they went.

Ironically, rumour was it was such a painful process, people were leaving the pilot region (in Victoria, it was down near Geelong) nobody knew how long the pilot program would run or when it would be rolled out in their district.

It way maybe three or four years before it went to phase two (1st roll out after the pilot) still impossible to get information of what we could get, what it would cover.

We all got the message in the early days not to get reports and supporting letters early, because the NDIA wouldn’t accept anything older than six months.

I digress,

So, when my region was rolled out, the Northern District of Melbourne, there were three large areas rolled out together. It was fucking chaos and this is the important part. This is how to stem the flow, rather than follow the pilot region (why else have a pilot region, I ask?) they outsourced to other agencies and businesses (Not for Profit, NGO’s) who had tendered for the contracts, but it felt like the information was not given in a clear and concise format.

 

No one was on the same page and it rather seemed untrained and inexperienced staff were only to gather information for someone else to decide.

I know my mum did some training with an agency that I was not allowed to attend (because I was the client) and it was more geared towards the others, carer or family members present whose participant was much higher needs and had the background of having funding. And I found my mum returning all very excited, I could get a FREE COMPUTER.

I sigh! Oh, dear God, what do I need to set her straight on now?

“You can get a free computer from Greenpeace”

What!? Did you hear that too? (I’m asking you, reading this post)

Um, mum that is an NGO to save the whales.

Daughter, ever so ungrateful, poo-pooing on mum’s new found wealth of knowledge.

“Fine, you call Greenpeace and ask for a FREE COMPUTER” on the other hand, “Green PC” was an NGO that would be donated computers, they would upgrade them and then donate them to people who reeked then, or had to buy them for not much at all.

They ceased trading back in (I forgot now, back in 2010?) because they felt every household in Australia had a computer.

I’m wrapping this post up now!

Oh wait, at first there was a rumble about how much the NDIS was costing tax-payers. More obviously, than they had imagined.

Then, they were suggesting they would dip into the NDIS bucket to give to the drought affected farmers, some much needed financial relief.

There was outrage!

Instead, pubs were offering $10.00 Parma and chips or Parma and salad deals and sending/donating the profit to the drought relief. Which is great, farmers are still dealing with drought.

But the lesson here is the government seemed to work out from the pilot region roll out, not what was needed and how to offer a service and deliver in a timely fashion, but how to slow down their money escaping the bucket too quickly.

If our NDIA ran like a business, no one would choose to do business with them or be their customer and here in lies my point. That is the point.

Footnote! The farmers while optimistic, were not at all on board with funds being taken from the disability sector. “For the drought-stricken farmers we pray for rain”.

 

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.

 

FU

Published July 26, 2019 by helentastic67

F.U.

I know, apart from the title of this blog being the acronym for my favourite swear words or word in this instance, it’s actually for ‘something else’.

I don’t understand this concept where I have to revisit ‘something’ issue/services, something over and over again and it’s still not getting done correctly. It is inefficiency at its absolute best.

You know, that old idea that if you work in an office and every time you deal with a certain issue or case (for example) you put a dot (.) in the top corner of the page. After a determined period of time (a month, a week?) if there are so many dots, you can’t see anything else on the page, then whatever method you are implementing is clearly not working and you should try something else.

Well, I have a new method or suggestion. How about PEOPLE DO THEIR FUCKING JOB! (C’mon, we all knew it would be in here somewhere, right)

For example

Arriving home today, just before 5pm, I respond to texts from my Plan Manager. (The intermediary that receives, approves and pays for all of my carers and services for my NDIS plan) They have received invoices from (for example) 2/1/19 – 2/1/19. Isn’t that the exact same date? Why yes, it is! For 100’s-1000’s of $$$$ and I need to tell them if they should approve payment. But how do I tell them if they should approve payment? How do I know if they are billing correctly if I don’t get and actual invoice?

SOLUTION: Call service provider for invoices. I get one of my ‘least favourite people’ (not my favourite) and because it’s so late in the day. The staff in billing have probably gone home. Prompting me to ask “Does no one work until 5pm anymore?”

Many places still have the 5pm ‘knock 0ff’ time or COB (Close Of Business) I imagine it’s a problem because I bet they still expect to be paid until 5pm.

I wish my day ended at 5pm. That’s generally when all my ‘housekeeping’ begins. Bring my washing in off the racks on the balcony. If not dry: rehang inside. (NO, I STILL DON’T HAVE A FUCKING DRYER), make dinner, filing, yes I do filing. East dinner, clean up, pack the dishwasher and some TV to keep up to date with who, what, where and when. Then emails, but I digress.

So, the woman on the phone gave me a number to call the following day. Was it so hard to get them to just post out my invoices? What? So, I have to ring again? And lastly, FU. In admin terms it’s Follow-up or to follow up.

I always seen to do a lot of this because people don’t know how to provide a service. Don’t get me started, I suspect to cover that another day.

 

Sisters

Published July 12, 2019 by helentastic67

Sisters

So, this will be a totally rare time I include the name of a business/company/service, I currently use. You will notice I don’t ever mention the name of my favourite café? Yeah, most of my followers are on foreign soil, so it’s irrelevant, but sometimes it’s hard enough to get a seat as is. That’s the only reason why though.

So, today I will mention one of the Care Providers I use, same reason as above, but it’s relevant to the story. This is also a likely example of how life has a tendency to go in full circles.

Ok, Circa 90’s when I worked in clubs with Malcolm (you can read about him here)

https://hellonwheelslifeonehanded.wordpress.com/2017/09/01/gdg-grand-daddy-goth/

He had (just like any DJ of that era) Yes, Yes what was generally referred to as a toilet song. You hear a certain song come on. Don’t get in a DJ’s way. It’s usually a rather long song/track that is long enough to get to the toilet, the bar and back to the DJ’s booth.

It was usually this one

My Carers come from Mercy Health. They manage the homes where all the retired nuns live. There is a women’s hospital (Mercy Health).

I am by all means not suggesting they are the best, but I’m never going to bother mentioning the ONLY agency that didn’t ask for me to participate in the regular NDIA audit and provide feedback about their services. Am I correct?

So, anyway, my carer today was telling me where she had to go after me. Most of my carers visit the nuns. I hear about it all the time.

So, my carer today said she was going off to the Sisters of Mercy and everything after that went straight over my head.

Back in the 90’s when I worked in clubs, I was NOT GOTHIC. But sometimes, I wore more, shall I say, socially acceptable styles to not ‘offend’ the Goths. There was always a boy with this…..

It was the era after all and sometimes I would just outright wear my dungarees (because they were light and comfy) and other times I wore my bright coloured raver street wear.

I miss those days.

However, The Sisters of Mercy (the band not the nuns.) is touring later in the year. I’m debating about seeing them. The play at The Forum, two days after my birthday.

Today’s Lunch – 22nd May 2019

Published May 22, 2019 by helentastic67

Today’s Lunch

Good Mental Health Day

Currently feeling hungover and seedy from the migraine I had yesterday! Why people drink I do not know? To be continued.

Today a shout out to my friend in Texas which is being hit by a tornado. You are in my thoughts. Stay safe.

To my friend in Florida, you know who you are. In Australia, cantaloupe has another name and that is Rockmelon. Not a fan either. Maybe the hubby should eat it outside?

And to my friend in Norfolk, I’m wondering if you have received your parcel? I have not heard from you for a while.

Before I get to today’s lunch offering, I’m hoping you can help a friend to reach his goal? This is also an example of how the NDIS his failing its clients.

With permission, my administrator Noelle who does my blog without charge to me, has a son who at a very young age had a stroke. This led to a diagnosis of cerebral palsy (C.P.) He is now 28 years young; he has never driven a car but loves V8 Supercars. Under his previous funding he had this passion financially paid for. He had day trips and overnight hotel stays paid for so he could go to the races and mingle with the drivers and grid girls. It’s how he produces his blog and website www.williamsperfectride.com The NDIA would  clearly prefer him to stay at home and not follow his passion at tax-payers expense. While V8 Supercars and such is not my thing, helping someone get to do their thing they love, is my thing. Can you please help him? Every little bit helps.

https://www.pozible.com/project/getting-back-to-the-track

Not doing any spoilers for the final season of GOT. Will binge the whole season on the weekend.

Now, after all of that done, today’s offering is another Ortolani quiche with side salad and my medicine!

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