The Support Worker Paradox

A kitchen bench with huge plastic containers filled with fried rice and chicken soup cooked by a support worker, in front of a bunch of spring onions.

Letting support workers into your life as a Disabled/Ill person is challenging. Not only are you asking them to do tasks you would usually do for yourself, you are inviting complete strangers to your home to view you at your most vulnerable.

What if you don’t get along? How do I employ someone? What if they’re set in their ways, and don’t want to adapt to my circumstances? What if their profile on HireUp talks about how they think children with disabilities are a blessing from God who inspire them to get out of bed every day?

That’s not even mentioning that with ME/CFS, being around people and stimulation in general is my kryptonite?*

Since mum’s circumstances have changed so dramatically due to a new diagnosis, we now have 4 support workers (or PAs) come to us a week, plus garden/yard maintenance. We are lucky to have gathered such an understanding team around us, but it took so much time and energy to accomplish. I’m still not quite comfortable with having new people in my space, and this new life.

*Hence the title of this post: am I so sick that I can’t do things for myself, but can’t stand having people around doing them for me either?

2020, a summary

I don’t want to be like every think piece from the past 8 months that begins with “in these unprecedented times”, so I’ll just update you briefly on what 2020 has brought for me. I started with health crises in the family and a whopping concussion, then a massive relapse which led to me needing my powerchair in my own home, a first for me.

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But are you disabled enough?

Hi friends,

Just a quick post to say that after a brief 9 months on the NDIS (National Disability Insurance Scheme), my eligibility is being reviewed. What does that mean? Your guess is as good as mine, but I’d say, “you don’t deserve these services, you fraud, and we’re going to take them away unless you ‘prove’ your disability all over again.”

Continue reading “But are you disabled enough?”

A disabled person’s perspective on COVID-19

Fun fact: the NDIS’ primary response to COVID-19 has been to increase provider fees by 10% so they remain viable. Participants’ plans have not been increased by the same amount. In effect, the amount of services they can access with their plans has been reduced.

Continue reading “A disabled person’s perspective on COVID-19”

Top 5 Reflections of 2019, or, a Year in Review

2019 was a hard year in many, many ways. My sewing and knitting production slowed down significantly – I made 11 garments compared to 29 the year before, and probably more the year before that. This was largely due to health reasons.

Continue reading “Top 5 Reflections of 2019, or, a Year in Review”

Last chance to donate to my 30th birthday fundraiser!

Hello, friends! Just a reminder that this is the last chance to donate to my fundraiser for Emerge for my 30th birthday. Emerge do such valuable work and have helped me so much in the past that it’s been an honour to be able to help them out in return. You can read more about what they do on my original post.

Emerge Australia logo

Thank you so much to everyone who has already donated; it means the world to me. Most donations have been anonymous so if you’d like me to know you donated, please comment below.

Donate here.

You can read more about Emerge on their website.

My 30th birthday fundraiser

Emerge Australia logo

Hello, friends! I turn 30 very soon and would greatly appreciate if you could donate to my fundraiser for Emerge Australia. Emerge is the leading ME/CFS society in Australia and does so much good work for people with ME/CFS; both supporting them personally and advocating politically. In their own words:

Emerge Australia exists to give hope and help to people living with myalgic encephalomyelitis/chronic fatigue syndrome.

Emerge have affected me personally through the support they offered both myself and my family when I was incredibly unwell. I have taken chronic illness management courses with them, and my family and I found their volunteer helpline and personal aid (I think now defunct?) invaluable during times of health crises.

In recent times, they have set up a telehealth nurse to offer free consults with ME/CFS patients, including helping with NDIS applications, and have also advocated for ME/CFS patients to be on List B for NDIS (their applications would carry more weight). This fundraising will also go towards developing GP education modules, one of which has just been released (so if you know a GP, let them know!).

1 in 100 Australians are estimated to have ME/CFS. 25% of people with ME/CFS are housebound/bedbound. 50 yrs as recognition as a neurological disorder by the World Health Organisation.

ME/CFS sorely lacks advocacy and research funding, so anything you can contribute would be welcome.

Donate here.

You can read more about Emerge on their website.

 

EDIT: I can’t see names on the donations, so if you’ve donated and want to let me know, please leave a comment!

I was accepted by the NDIS

Warning: contains GIFs

Basically what the title says! After years of waiting and applying and providing evidence and having multiple breakdowns because of it, I’m finally part of the NDIS (National Disability Insurance Scheme, basically now the only way for disabled people to access social supports in Australia).

I received my “access request met” letter a few months ago, but couldn’t bring myself to announce it here in case it was some elaborate hoax. I’m still half certain that there is someone hiding behind the bushes out front, waiting for the day I expect a support to arrive so they can leap out with video camera in hand, yelling “PUNK’D!”*

GIF: woman in Nick show leans back in her seat and exclaims with hand gestures,

 

Continue reading “I was accepted by the NDIS”

NDIS Internal Review

For those following along with my NDIS progress (or lack thereof), I was recently contacted by the NDIA internal review team to inform me that my review was beginning – 14 months after I submitted my request for a review, and over 2 years after initially applying for NDIS. The system works, right!?!?

Continue reading “NDIS Internal Review”