Category Archives for "Health and Behaviour"

Staying safer in a Wheelchair – Tips for wheelchair users and those who love or work with them

Staying safer in a Wheelchair through COVID-19

Cleaning your Chair
Everytime someone different touches your chair, or you leave home or come back, you’ll want to have these bits cleaned with a proper disinfectant (baby wipes DO NOT CUT IT and will NOT kill the virus).

• Joystick
• Head controls
• Mouth controls
• Push handles
• Headrest
• Armrests
• Side guards
• Back of the wheelchair

  Cleaning Other Assistive Equipment and stuff
Don’t forget other equipment you might use, like:

• Feeding and drinking equipment
• Walkers
• Crutches/sticks
• Bathroom and other rails
• Steering wheel and door buttons and handles on cars
• Any equipment that you handle or put near your mouth
• Oxygen tanks
• Transfer seats
• Medical stuff like bags/continence related needs
• Medication or other items in your home
• A backpack or purse that touches your chair

Staying Safe When You’re Out
You could think about:

• If you have plastic gloves wear them when you are out of your home.
  • DO NOT Touch your face with the plastic gloves and always clean anything you have touched after you dispose of the gloves.
• If you travel in a taxi or bus etc, do not touch anything metal and avoid touching anything except your wheelchair.

Don’t forget that these tips are all ON TOP OF all the precautions that everyone should be considering – like disinfecting doorknobs, keyboards, remotes, computer tablets/ipads, phones, fridge handles, cupboard handles, light switches, taps etc etc – this is NOT an exhaustive list by any stretch.

Maybe now is a good time to get some voice controlled stuff set up in your home – lights etc can all be run without having to touch anything and if you are a wheelchair user looking for more independence and light switches are hard for you, I reckon you could claim those light bulbs (available at hardware and office supply places and even BigW etc.) from your core NDIS funds if you are self or plan managed.

To download the poster, visit www.thegrowingspace.com.au/covid19

HUGE thanks to Yellow Submarine for the poster and info – they share some cool stuff, so worth a follow!

Pis desc: A meme in light blue with the following words and a checklist:

Crip the Coronavirus
Keeping safe from the Coronavirus
These parts of my wheelchair should be disinfected any time a new person comes into contact with my chair or when I leave and return from my home

Joystick
Head controls
Mouth controls
Head rest
Arm rests
Side guards
Back of the wheelchair
Push handles
Other

Remember – disinfect with a 70% alcohol based solution, wipe down anything you touch, including in the car, medications, equipment and purses, backpacks
Support workers, wear gloves during personal care

Yellow Sub Down Under logo and an image of Professor X from the X men, a white man sitting in a wheelchair with x shaped wheels

https://www.facebook.com/yellowsubmarinedownunder

Top 31 Ways to use Support Workers while avoiding COVID-19

For some participants, personal care, lifting and other physical support needs means you can’t avoid having direct contact with support workers.

But there are many people in the NDIS, who don’t need that physical support. If you are one of those people, you can ask your support workers to help support you, but to work to not touch you or get close to you. Here are a stack of ideas. Please feel free to add your own to share!

The most important thing is to always make sure they wash their hands, really well, as soon as they arrive or meet you.

So, depending on your support needs, your worker could maybe:

1. meet you outside and go for a walk together, keeping a few metres apart
2. sit outside, 2 metres apart, and learn to play an instrument together (like ukulele, or the recorder
3. make and/or fly a kite at the local park
4. leave your laundry outside the front door, and ask your support worker to pick it up, take it home, wash and dry, and then return it if they’re ok to do this
5. get a free skype account and talk, and read books, help prompt or direct you with cooking something yummy, watch a TV show or movie at the same time as you, play online games together or even do your online shopping together
6. take you for a drive (with you in the back if you’re not driving!) with the windows down and play the music loud and sing (this may not be a safe enough distance apart, however)
7. help you find and collect some free or cheap basic gym equipment, set it up outside, and have the worker direct, from a safe distance, a great workout
8. if legal and safe, have a fire pit set up and sit either side of it and tell ghost stories, or eat lots of marshmallows
9. google outdoor yard pranks and have some fun with neighbourhood friends
10. try geocaching
11. sit across an outside table at home, and pain rocks, and then walk to a local park and hide them for others to find (google “painted rocks” to learn more)
12. letterbox the neighbours with you and offer to walk their dogs for free or pay
13. do your shopping and errands without you if you are at risk, so you are less likely to be exposed
14. find a free or cheap outdoor table on gumtree or facebook, make a net from an old pair of stockings, grab some table tennis bats online and play ping pong outside in the driveway (or beer pong if you’re old enough and like beer as much as my son!)
15. wash the car together, but always on opposite sides of the car, and wear gloves
16. build a garden together and grow some food, herbs or pretty flowers
17. have your worker help you facetime with your friends
18. learn a new language together (maybe Auslan – sign language)
19. tennis is a low contact game, and maybe renting a couple of kayaks or going for a bike ride could work to get outside
20. remote art programs
21. have them help you sort out a home budget
22. check out the bazillions of online learning apps and homeschool resources
23. do some virtual tours of some of the world’s greatest museums and art galleries
24. play Pictionary or scrabble by zoom
25. develop a daily routine and make some visual schedules together
26. learn to do some outdoor household chores – like sweeping or picking up the dog poop
27. teach the dog a few new tricks – tonnes of great YouTube videos to learn this
28. learn a magic trick together
29. but a cheap blind from the bargain bin, and see if you can borrow or score an old cheap projector, and set up an outdoor cinema at home for an evening – just keep those bean bags a few metres apart
30. learn about botany, and collect samples from your local parks and build an album of dried leaves and flowers
31. make a podcast remotely together

I’ve not included links for all of these – a quick google will probably get you a bunch of good answers!

This list was compiled, in part, with some ideas from the (awesome) people in the “NDIS Self-Managing Participants And Their Families” Facebook Group. Thank you for their brilliant ideas.

Feel free to share this list, with credit, but add your own ideas, too!

22 March 2020

FREE COVID19 Webinar for NDIS Participants and Families

For disabled people and families – Practical strategies and ideas, led by Sam Paior – The Growing Space
1 hour on Wednesday March 25th

WA: 8:00AMNT: 9:30AMQLD: 10:00AMSA: 10:30AMVIC/ACT/NSW/TAS: 11:00AM

Book here now: thegrowingspace.com.au/covid19/ (Auslan Interpreter AND live captioning now booked!)

In this one hour Zoom webinar, we are not going to just tell you to wash your hands – you already know about that.
But we ARE going to go through ways to manage service providers and day options and ADE closures and talk about the big issues – and what happens if someone in my group home tests positive?
As well as ways to creatively utilise your support workers now that many recreation options are also closed.
We’ll also talk about related NDIS issues and options and ideas for looking after yourself and those you love.

We expect this to be the first in a series as everything is changing so quickly!

Many thanks to Disability Services Consulting for sharing their zoom webinar service with us to use.
pic desc: a blue confused looking icon of a virus with two sharp white teeth and googly eyes

Support Co-ordination in a Pandemic – a practical checklist for Support Coordinators

Contact EVERY client and help them assess their critical needs, supports and ability to manage if/when it all goes pear shaped.

Here are the questions (reworded from our internal slightly to take out my swearing and add a few things I missed) our team are talking to our clients about.

1. Do they know what this is all about – have families/carers explained the current situation? Here’s an easy English resource: https://www.thegrowingspace.com.au/wp-content/uploads/2020/03/Easy-English-Coronavirus-TheGrowingSpace-2020.pdf and a social story: https://carolgraysocialstories.com/wp-content/uploads/2020/03/Pandemics-and-the-Coronavirus.pdf
2. Do they understand the risks for them (ie: are they at greater risk – smoker, lung concerns, diabetes, immunosuppressed for example – not an exhaustive list) – point them to official information sources https://www.health.gov.au/ and the COVID hotline: 1800 020 080
3. Are they considering self-isolating and if so, what preparation has been done?
4. Do they have a week or two of essential supplies – food, hygiene, cleaning
5. Do they have a month of prescription medication and over-the-counter medication (don’t forget laxatives!)
6. Do they have enough consumables – continence aids, wipes, catheters, feeling tube gear to last a month or so?
7. What are their CRITICAL (could die without) support needs, and do the providers of these supports have a plan in place to support them?
8. If they have significant critical support needs, is there a way a worker could move in a self-isolate with them?
9. Can their family/informal supports cover if support workers are no longer available – what is the back-up plan if they’re not available?
10. What are their plans for support if/when day options/ADE/school closes, or if someone in their group home gets sick?
11. Have they consider having support workers doing as much work as possible outside with participants, keeping well apart if possible, and have they considered all the ways a support worker can help remotely to reduce risk (obviously this won’t be possible for everyone!)
12. Do they have a cleaner and do they want to keep them on – consider only allowing the cleaner to use the participant’s cloths, mop, duster and vacuum to reduce the chances of spread.
13. Handwashing – do they understand the protocol, and are they confident to demand this of workers – if self employing or contracting, do they know about the free training on offer – https://covid-19training.com.au/login.php and https://training.disabilityservicesconsulting.com.au/products/infectionfree and, could they put up a poster https://www.thegrowingspace.com.au/a-sign-for-your-door-or-workplace-covid-19/, and set up a handwashing station outside to use before anyone even enters the house? (no-one should share the handtowels which should be washed daily in 60deg water, or they could use paper towels potentially)
14. NDIS – do they know about the changes – ability to rollover plans etc? Make sure you are well across the daily updates at https://www.ndis.gov.au/understanding/ndis-and-other-government-services/ndis-and-disaster-response#faq
15. Check in on their mental health – this is a very stressful time for many – ask how often they’d like you to check in, and potentially refer/suggest support from mental health professionals
16. Follow up with an email for those for whom it might be useful – outline the stuff they’re already doing to prepare, they stuff you talked about that they could action, and the things you’re going to do for them, as well as when you will contact them next (this email could likely work as your casenote).

Please don’t assume you know the answers to above without that direct conversation (where possible). I have been surprised by the gaps, and our support and ideas have been appreciated.

At The Growing Space, we have worked to assign each participant a risk level (A-D) to help us know when things get really bad, who is most at risk, based on the answers to these questions – it also means that if one of our team can’t work,  someone else should be able to quickly and easily pick up and follow up with those who need it the most.

And don’t forget – what is *your* plan for maintaining your mental health, and what is *your* back-up plan if you can’t look after your clients yourself?

Support Coordinators are not medical or legal professionals, so don’t cross those boundaries – be aware of your limitations and refer out as needed.

All the best during these tough times!

Copyright of The Growing Space 2020 – please share, but with credit and no edits. And remember – this is not medical or legal advice, and is very time sensitive – things are changing very quickly  – seek professional advice if you need it!                   March 20, 2020

pic desc: an illustrated green virus icon with an open mouth and scared looking eyes.

A sign for your door or workplace – COVID-19

Feel free to download and use one of these on your front door – at home and your workplace to remind people to stay away if they’re sick, and to wash their hands as they come in.

You’re welcome to share these freely

Here is a .pdf version: https://www.thegrowingspace.com.au/wp-content/uploads/2020/03/Do-Not-Enter-TGS.pdf

And here is a .jpg image version: https://www.thegrowingspace.com.au/wp-content/uploads/2020/03/BIG-PURPLE-DO-NOT-ENTER-SIGN-MARCH-2020.jpg

Coronavirus/COVID19 Easy English Resource

This is useful for those with low literacy, intellectual or cognitive disability, learning disability, and for some from CALD or ATSI backgrounds. In the pdf each sentence below is accompanied by a relevant image. The language is simple and clear and accessible. The resource is five pages long and covers information about self isolation and business closures and distancing rules.

This handout is copyright of The Growing Space 2020. You are welcome to share, copy and distribute this handout whole, with credit and no edits. If you would like to publish this handout, please contact us at info@TheGrowingSpace.com.au for approval.

Ready to learn: Interoception Kit

Everything Is Awful and I’m Not Okay: questions to ask before giving up

Are you hydrated? If not, have a glass of water.

Have you eaten in the past three hours? If not, get some food — something with protein, not just simple carbs. Perhaps some nuts or hummus?

Have you showered in the past day? If not, take a shower right now.

If daytime: are you dressed? If not, put on clean clothes that aren’t pajamas. Give yourself permission to wear something special, whether it’s a funny t-shirt or a pretty dress.

If nighttime: are you sleepy and fatigued but resisting going to sleep? Put on pajamas, make yourself cozy in bed with a teddy bear and the sound of falling rain, and close your eyes for fifteen minutes — no electronic screens allowed. If you’re still awake after that, you can get up again; no pressure.

Have you stretched your legs in the past day? If not, do so right now. If you don’t have the spoons for a run or trip to the gym, just walk around the block, then keep walking as long as you please. If the weather’s crap, drive to a big box store (e.g. Target) and go on a brisk walk through the aisles you normally skip.

Have you said something nice to someone in the past day? Do so, whether online or in person. Make it genuine; wait until you see something really wonderful about someone, and tell them about it.

Have you moved your body to music in the past day? If not, do so — jog for the length of an EDM song at your favorite BPM, or just dance around the room for the length of an upbeat song.

Have you cuddled a living being in the past two days? If not, do so. Don’t be afraid to ask for hugs from friends or friends’ pets. Most of them will enjoy the cuddles too; you’re not imposing on them.

Do you feel ineffective? Pause right now and get something small completed, whether it’s responding to an e-mail, loading up the dishwasher, or packing your gym bag for your next trip. Good job!

Do you feel unattractive? Take a goddamn selfie. Your friends will remind you how great you look, and you’ll fight society’s restrictions on what beauty can look like.

Do you feel paralyzed by indecision? Give yourself ten minutes to sit back and figure out a game plan for the day. If a particular decision or problem is still being a roadblock, simply set it aside for now, and pick something else that seems doable. Right now, the important part is to break through that stasis, even if it means doing something trivial.

Have you seen a therapist in the past few days? If not, hang on until your next therapy visit and talk through things then.

Have you been over-exerting yourself lately — physically, emotionally, socially, or intellectually? That can take a toll that lingers for days. Give yourself a break in that area, whether it’s physical rest, taking time alone, or relaxing with some silly entertainment.

Have you changed any of your medications in the past couple of weeks, including skipped doses or a change in generic prescription brand? That may be screwing with your head. Give things a few days, then talk to your doctor if it doesn’t settle down.

Have you waited a week? Sometimes our perception of life is skewed, and we can’t even tell that we’re not thinking clearly, and there’s no obvious external cause. It happens. Keep yourself going for a full week, whatever it takes, and see if you still feel the same way then.

You’ve made it this far, and you will make it through. You are stronger than you think.

https://eponis.tumblr.com/…/everything-is-awful-and-im-not-…

Pic desc: a glass of water on a blue background

Hospital Social Stories Resources

WORTH SHARING and SAVING: This is a whole series of social stories with pictures, useful for people with intellectual disability, cognitive disability, children, or those from CALD backgrounds who may not be good at English or simply haven’t experienced hospital visits before.

https://www.aci.health.nsw.gov.au/resources/intellectual-disability/childrens-services/say-less-show-more

Each one is about a common hospital event or procedure – like

– getting a blood test
– an x-ray or scan
– going to hospital for an operation

They’re in fairly clear language, but not in Easy English, which is a shame, but they’re a great start, and worth checking out, and worth a share – you never know when you’ll need them!

Spoiling Day

I have a very wise and very dear friend called Donna.
She has ten children, and Caleb, her youngest, is now a young aspiring Paralympian table tennis athlete.
I have learned a great deal from Donna, parent extraordinaire, over the years, but today I want to share one little gem.
“Spoiling Day”
Even before her youngest was born, Donna did a “Spoiling Day” each month with each of her kids, who would write their names to reserve a spot in her diary.
When Caleb was born with disability and life-threatening medical issues, Spoiling Day became even more important.
Donna spent a half day, or a few hours, with each of her children 1:1, doing whatever *they* want to do.
It’s special time with Mum. And it didn’t need to cost much, if anything.
So for one the kids, they would like nothing better than getting a big bag of hot chips, sitting by the ocean, sharing them with each other, and throwing them to the seagulls.
For another, it might have been baking some sweet treats together for the afternoon.
For another, it was (and I *love* this one) taking a bag of hot chips to school at lunchtime, and sitting with her son and his friends sharing them in the schoolyard. What a great way to let a kid know they’re important!
Finding 1:1 time with that many kids was obviously a challenge, but Donna let their schools know how important it was to her family, so pulling each child out of school for a few hours once a month or so, was welcomed by an understanding school leadership.
As you can imagine, time is a precious thing when you have ten kids, and moreso when one of them needs a whole lot more hospital, doctor and therapy time than others, so often Caleb would come along to “Spoiling Day” when he was little, but the focus was always on the child whose name was in Donna’s diary. And Caleb would get his own “Spoiling Day” too, of course.
All of Donna’s kids are adults now, but most of them still write their names in her diary for a spoiling day now and then, but now they tend to take her out!
So, have you considered a “Spoiling Day” with your kids?
The bond between your children will hopefully be there long after you are gone, so supporting all your children, and making time for them can really help build their lifelong relationships well after you’re gone.
Thank you Donna for your wisdom.

For more parenting and sibling support and wisdom, Siblings Australia is available to support families who want to better support sibling relationships, and they are a registered NDIS provider. Just a few hours consult with Kate Strohm from Siblings Australia can be such good value. Check them out at https://siblingsaustralia.org.au/

pic desc: a family photo taken at a fairly formal event. Donna standing in the middle of a dozen family members including a babe in arms, behind some of her sons, including Caleb who is sitting in his wheelchair. Everyone is dressed up beautifully in frocks and suits with some very large helium filled gold sparkly balloons behind them. Nearly everyone has a wide smile on their face.
(Posted with permission from Caleb and Donna!)