Hot off the Press – 15th June 2021

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.

Hot Off the Press – 19th May 2020

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

Red Tape

Red Tape

People who don’t work or live in a world of disability don’t understand what life is like without.

Last week I spent some time with a brain injury group and the moment I sat down, I felt the clawing hands of desperation to get at my funding, to benefit the place I was at.

I mean, I walked in and all the members were excited because they were all waiting patiently for “stuff to happen.” Then the staff started treating me like I worked there. How many people are coming? Where is Neil?

Admittedly, I live closer than Neil (who is from the Peninsula and runs a group called ‘United Brains’) There weren’t enough chairs and I was informed  there were “staff” in the meeting room next door and they were using all the chairs.

Call me crazy, but I don’t think much success can come of a business model that doesn’t prioritise chairs for welcoming visitors. That’s not even the thing that made me completely livid last week.

But the ‘thing’ that annoyed me the most was when one woman stated the staff at the NDIA don’t come from a disability background, because they want to treat us like we are NORMAL.

Grrrrrrr….. this is why I’ve had to explain what my AFO does, why I had medically approved shoes and why I deal with migraines all the damn time.

I’m pretty certain, I’ve NEVER BEEN NORMAL!

Normal does sound pretty boring.

 

Today’s Lunch – 14th February 2018

Today’s Lunch

Good Mental Health Day

Having to fight a migraine since Monday when I had a call from my mum while in the taxi. (Yes, I love her but we do not communicate well at times) and prompting Young John to ask why I let her speak to me so?

Have had a final push with all things NDIS and it needs to be said, because on the upside and because my mum has likely now spoken to every single person at the NDIA, she squashed someone’s incompetence and stopped me potentially being blacklisted by the NDIA!

Any wonder I have a migraine! So really intend to enjoy lunch today!

Today’s offering (forget the name!) is marinated Mediterranean vegetables with a side salad
and my medicine!

 

 

 

 

 

 

 

 

 

And if no-one has said it today? Happy fucking Valentines!

Cheers,
H

P.S. here’s a yummy frozen yoghurt thing I had last Friday!
I’m converted!

Cheers,
H

Hot off the Press – 1st January 2018

Hot off the Press

Happy New Year everyone!

Because, despite all the posts and such of well wishes for the New Year for about the last week, causing me to think the last day of 2017 was Saturday night! It wasn’t, it was last night, Sunday night and it made no difference to me whatsoever I still failed to make it to midnight without a kip!

So, that leads me to my plans for Hot off the Press in 2018! A few of you comment that my life is busy and because I write a few lines of those posts every night, it does seem that way, so to explain. Each week is all about appointments that keep me independent, healthy, physically, mentally and reasonably well adjusted. That said, the year flies by when you see the chiropractor every week. Sometimes twice, hence the well-adjusted comment. I see my acupuncturist every week also. I could do Osteo and Milo/remedial every week, if I can get it. My GP, I see monthly, and he and I share case-managing of all my medical care. Then, enter my shrink (yes, yes, psychologist!) once a month. And then there are the 1-3 weekly appointments to do my nails. My fingernails I could get done weekly, my toenails every three weeks and because the public local community health is so painful and inefficient and inadequate I think I’ll be paying my beautician rather than deal with the public system any longer. It might be a worthy expense if it saves my mental health in any way. My beautician is close to my other services and has agreed to do what I need for a reduced fee. I might even pay for an occasional pedicure.

While this sounds like very first world problems, my only exercise is walking and no one is looking after my feet except me. Wearing only one pair of shoes that lasted four years, every day has failed to help either. I still need a second pair and The NDIA (National Disability Insurance Agency) who manage the Scheme, have yet to press the button to allow me to use my funding. Who knew a government such as ours in Australia would score points and pat themselves on the head for helping (sorry, claiming to help) people with disabilities, yet they make it impossible to access the funding that is supposed to be there for me to better my situation. Again, hating feeling like a commodity.

So, going forward, I’m wanting to free up time in my life so it’s not so stuck in survival mode and perhaps step back from the fighting to survive and attempt to have more good things? Even if I park myself in another cafe closer to home, write posts or read comics and this will get me out in the community and not so secluded at home. I will try to do this another day other than Wednesday, however while I won’t post on it that day, I might add those pictures to my standard Wednesday post. I will continue to comment, reply to comments, follow and offer any positive support I can to other bloggers who might be struggling more than I am. It’s how I can reach out and touch people in this  community I have come to love being part of. You can always feel free to email me at hfantastique@gmail.com.au

Also, moving forward I’m going to have Monday’s, Hot off the Press posts are going to be suspended and bring you some of my older articles that have been waiting to be posted, these normally only go live on a Friday. Those are my well, thought out posts on anything and everything. I might even get around to writing the post that explains the whole reason why I blog. I might even rush it and jump the queue.

Lately I haven’t been terribly inspired to write these posts as I’ve been busy with the day to day and not inspired to write when there is already a huge backlog of those carefully written posts. I often sit and smash out four or more posts at once when I’m in the mood and that leads me to get to the other things I keep putting off writing about. So, here’s hoping you have stuck with me through this post and feel free to hit the Like button and comment. I do like to know how people came to misunderstand my appreciation of the Like button. I might need to adjust my description in my About page? I definitely need the validation just like everybody else.
Cheers,
H