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Ups and downs of Home care Support and government funding

heathber

Entry posted by heathber in update

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Hi All I haven't blogged for ages, thought it was time for a quick update.

 

I've been self funded for all my care and therapy since my stroke but with the shutdowns here in early 2020 I was forced into the realisation that I am not as independent as I thought I was.  So I finally applied for government assistance with health, self care and therapy costs through our NDIS (National Disability Insurance Scheme). It's been a roller coaster over the last 14 months getting all the information together and the medical assessments done and then fighting with the bureaucrats who control the system about what supports I need and  what they will fund (or more accurately what they won't fund.) and then trying to organise new care workers during a pandemic (which thankfully here is largely not an issue).

 

Anyway yesterday I had my first Saturday cooking and market assistance day. We had fun, cooked zucchini slice, went to the fresh food market, planted a new cactus into a little pot (my office plants did not survive the over 12 months with no one in the office) I was back in the office for the first time since Feb 2020 last Thursday, but that's another story.

 

Skye my new home help, comes twice a week, Tuesdays she comes and cleans the apartment and helps me with the tidying up chores that the "normal" cleaners just don't do, then on the weekend we do the "fun" stuff and get me setup with food for the rest of the week (I'll cook the curry myself this afternoon, we bought the bits for it but Skye had to leave for her other job and I was running out of steam.)

 

I also now have hydrotherapy in my apartment complex pool every 2 weeks through the scheme, and they give me a rebate for some of the costs of my personal trainers, and specialist physiotherapy treatments.

 

My Support coordinator is also looking into getting me to some disability snorkelling sessions if we can organise it before the water gets too cold.

 

So I'm in a pretty good place (mentally and physically) at the moment although the ongoing fatigue sucks pretty bad some days.

-Heather

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swilkinson

I like the idea of the market and cooking day. Cleaning services are needed but the help with shopping and cooking are going to be real time savers for you. When I first realised I needed help when I was looking after Ray I felt so ashamed but when I had the extra care I realised that meant we had a more relaxed life and more time for fun. I hope you are feeling more relaxed now?

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heathber

Thanks Sue yes it makes a huge difference having someone with me at the market. It's not that I can't do it, it's that I pay for it after in other ways

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GreenQueen

Awesome Heather!

I literally have just been on the phone with my OT, we've been discussing what else is needed to make things easier for me.

 

You, like me, have realised just how much we have 'managed ' on our own...but at the detriment to stamina!

 

Hope the snorkelling happens!

 

💚👑

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HostTracy

So happy to hear about your support system. I am so sure you both are getting something positive. It sounds like fun... I would love to have someone around to enjoy things with and you deserve all the help you need Heather. 🙂

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heathber

This week I had a quick trial of a new toy. It's an active estim device for wrist and fingers. That actually senses the muscle movement under the skin and fires only when you manage enough activation, and the assistance continues until you manage to relax the muscles enough (not like a classic estim that does timed pulses), I'm now trying to setup a 1 month in home trial to see if it helps enough to be worth getting one of my own, both the trial (unit rental and extra OT sessions) and the unit purchase should be funded under NDIS but as it's not already in my plan we are going to have to jump through the hoops and hope they agree it's worth it.  On the bright side I have history of this sort of device working for me, so They should see me as a good candidate for funding. fingers crossed

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GreenQueen

Hope you do get the funding Heather.

 

I've just had my plan review.   The lady made me feel all kinds of stupid and disabled. 

 

Good thing my support coordinator is awesome. 

 

💚👑

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heathber

Its amazing how the people who are supposed to help us do their best to be unhelpful and make us feel small and silly isn't it. Thank goodness for independent support coordinators, This new "independent assessment" process they are trying to bring in is going to be bad!

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HostTracy

I was just remembering today that this December will be my 3rd year mark for disability and i'll have to a reassessment process. This makes my anxiety go way up just thinking about it. Yep they make it as hard as they can here. I ruminate that I will lose my disability and it will be a domino that topples all i have over. :crying:My worry about it is ridiculous (but after my 3 years of trying to win my case...yep i'm freaked out by it). Ok moving on to another topic :dumb: the inner Tracy is freaking out!

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heathber

((Hugs)) Tracy, I do hope it isn't as bad as you think it might be, but yes it does trigger anxiety, well in my case anger/stubbornness. Every time they try to say no I just dig my heels in harder. I know I qualify and I don't accept "no" for an answer.  I was the same when they tried to refuse me a driving licence.

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HostTracy

Heather I am filled with that same knowledge and determination. My Psychiatrist says 100% I will not be able to work in the regular workforce again. I know he will do his part and make it clear. Never sounds so permanent but for me and my ability to control my anxiety (which could lead to another stroke) it is important. There are things I want to be able to do to supplement my disability income and my therapist and myself work on this topic. I have no idea why i feel i have to explain myself. The thought of going back into the work force terrifies me. I can feel my chest get heavy just thinking about it. I need to try to go back to sleep lol and not look at the computer right now. (Anxiety has been crazy today and my sleep well tonight has been mostly waking back up.) ((Hugs)) back to you Heather.

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heathber

Tracy it's the old ignore the pink elephant in the middle of the room conundrum isn't it. I hope you managed to tone the brain down enough to get some sleep.

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HostTracy
49 minutes ago, heathber said:

Tracy it's the old ignore the pink elephant in the middle of the room conundrum isn't it. I hope you managed to tone the brain down enough to get some sleep.

Yes it is!! Thankfully, I did get settled down and slept for a bit. I had my therapy today (good timing) and then my PT this afternoon. My anxiety is much calmer now and I hope my brain wants to sleep early tonight (crossing my fingers).

 

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GreenQueen

Tracy I hope your sleeping is improving 💚💚

 

Banjo I'm so very glad you have support!  It will make a huge difference for you.

 

So far, except for the review conversation, I have been satisfied with ndis.  Hope it continues!

 

Heather if the machine is under $1500, just go for it. My support coordinator said anything under $1500 that will help, do it.

 

If they catch up with you, act dumb, say you didn't realise.  Smack on the fingers. Move on.

 

Sounds like a plan!

 

💚👑

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