Inform issue 30 - Autumn 2020

AUTUMN EDITION 

FEATURE 

The Secrets of Social Skills 

NDIS FEATURE 

NDIS 101: Supporting Evidence 

COVER FEATURE 

Living the Dream 

2020

Inform is 

Independence 

Australia’s crossdisability 

magazine. 

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responsibility for errors 

or omissions of any 

consequences of reliance in 

this publication. The opinions 

expressed in this publication 

do not necessarily represent 

the views of Independence 

Australia. Medical information 

included is not intended to be 

a substitute for professional 

advice. 

Your NDIS journey 

of care starts here 

The National Disability Insurance Scheme (NDIS) 

is a new way to provide support for Australians 

with a disability, their families and carers. 

CORE 

SUPPORTS 

Daily activities: In-home 

& in the community. 

Consumables & 

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BUILDING 

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development & 

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independenceaus 

STEP 1. 

Preparing 

your plan. 

STEP 2. 

Developing 

your plan. 

STEP 3. 

Getting your 

plan approved 

by the NDIA. 

STEP 4. 

Choosing your 

providers and 

implementing 

your plan. 

Visit independenceaustralia.com/ndis 

to learn more about the NDIS 

and how it affects you. 

STEP 5. 

Reviewing 

your plan.

Welcome 

informonline.org.au 

3 

ISSUE #30 

contents 

4 

Eyes on the 

prize 

In this issue of Inform we celebrate the hard workers, 

the people out there every day working at achieving 

their dreams. In our feature story we catch up with paraathlete 

Alistair Donohoe who at the time of writing had 

just received the news that the 2020 Tokyo Paralympics 

had been postponed due to the COVID-19 pandemic. 

However, Alistair isn’t letting this stop him from 

achieving his goals, and is more determined than ever 

to secure gold in 2021. 

Also in this issue we speak to Andi Snelling, who 

has taken creative inspiration from her chronic illness 

to create her award-winning solo theatre work Happy- 

Go-Wrong. 

This magazine issue will also be our final printed issue. 

Two years ago we were fortunate enough to receive 

a grant from the National Disability Insurance Agency 

which has allowed us to continue to bring you quality 

printed content, but this grant period has now come to 

a close. However this is not the end of Inform! We have 

now moved 100% online, to www.informonline.org.au. 

Please subscribe today to ensure that you stay up to 

date with all Inform news. 

The Inform team is committed to bringing you quality, 

informative content wherever you are in Australia, so we 

encourage you to get in touch with us if you have a story 

of independence to share. You can reach the team at 


Alison Crowe 

4 

Living the Dream 

10 

The Secrets of Social Skills 

14 

When Simple Changes Matter 

Most at Work: A JobAccess 

Story 

16 

NDIS 101: Supporting Evidence 

18 

Creative Possibilities 

22 

Providing Hope 

24 

Auslan 101 

28 

News 

30 

The Science of Sleep 

Managing Editor: Alison Crowe 

Deputy Editor: Kirby Fenwick 

Design: Sarah Zen 

Cover Story Photography Supplied 

by Paralympics Australia

4 informonline.org.au Feature 

Living the 

Dream

Feature 


5 

Alistair Donohoe had always dreamed of being an elite sportsperson. 

It’s a dream the World Champion and Paralympic silver medallist lives 

every day. Inform caught up Alistair to talk about his many career 

highlights and why there’s still plenty more he wants to achieve. 

Alistair Donohoe has never had a plan b. After 

multiple world championships and Paralympic 

medals though, it’s clear the twenty-five-year-old 

doesn’t need one. 

Today, Donohoe is a professional cyclist spending his weeks 

riding hundreds of kilometres and putting in hours at the gym 

training for his next race. But eleven years ago, he was an 

active 14-year-old living with his family in Darwin, dabbling in 

everything from gymnastics to triathlons. 

‘I did triathlon with my parents. They got into that just to keep 

fit, and I ended up just kind of following suit with them. And 

then I actually really enjoyed kid’s triathlon. And then more 

specifically really enjoyed the bike aspect,’ Donohoe told 

Inform from his Sunshine Coast training base. 

At the tender age of 12, Donohoe shifted his focus from 

triathlon to cycling. At the beginning, he did all kinds 

of cycling from BMX and mountain biking to road and 

velodrome. But a move to Melbourne to complete high 

school saw him focus on road and velodrome. 

‘The competition in Melbourne is far tougher and there's far 

more to do. So, I got into the road and velodrome aspect 

when I was there. And yeah, the rest is kind of history.’ 

But there’s far more to Donohoe’s story that just that. At 

14, while swimming at a local creek in Darwin with friends, 

Donohoe jumped out of a tree, like he’d done plenty of times 

before. But this time, he got tangled in the rope. 

‘The damage caused from going from falling to a complete 

stop on the rope severed through 90 per cent of my tricep 

and 80 per cent my bicep.’ 

Donohoe says that while many people ask him how he dealt 

with such an injury at such a young age, he says he was 

focussed on being a teenager, spending time with his friends 

and doing what he normally did. 

‘I have a vivid memory of being in a wrist brace with a 

massive swollen arm and going to the local Wednesday night 

running club with my parents, and just running with my arm 

across my chest, strapped to my chest.’


‘To win once is a great 

achievement because 

it takes a lot to win 

but… to win twice 

really kind of put a 

stamp on it.’ 

Growing up Alistair Donohoe, 

left, always dreamed of being 

an elite sportsperson. 

Image: Supplied. 

After months of occupational therapy and 

burns treatment, Donohoe says the swelling 

went down and movement in his wrist 

slowly began to return. 

‘Now it looks like I've had a shark take a bite 

out of my tricep. 

‘I was a bit sensitive with my arm in terms of 

its cosmetic appearance and what people 

might have thought about it. And I didn't 

really like to wear singlets because my arm 

looked funny. By the time I was 18 I was 

over that. 

‘People often ask, how did you deal with 

it? And I'm like, well, I didn't do anything 

different. I think I've been pretty blessed in 

life to have that sort of mentality that when 

a little bit of adversity comes my way I don't 

actually end up thinking about it too much, 

I just kind of have an innate ability to get on 

with it.’ 

That kind of thinking and the ability to 

overcome adversity is certainly a handy 

attribute to have when you’re a professional 

athlete. After more than seven years riding 

professionally, Donohoe has collected an 

impressive number of highlights. He won 

two silver medals at the Rio Paralympics, 

in the individual pursuit and the road time 

trial. He’s also a World Champion eight 

times over. 

‘I don't want to sound at all blasé, but 

I've won eight World Championships, so 

you can't sit there and list eight World 

Championships as the highlight but I think 

for me the first one I won was definitely 

like a massive relief, well not relief, it was 

ecstatic. 

‘I'd finally made it to the top step. And that 

was definitely a highlight. 

‘But I think that actually one of the bigger 

highlights came the next year, being the 

defending champion, going into it and 

having a real target on your back. I won 

in 2015 again and that, for me, I just felt 

so much internal pressure going in, being 

defending champ and you know, tough 

course and I really, really wanted it and I 

think to win once is a great achievement 

because it takes a lot to win but… to win 

twice really kind of put a stamp on it. 

‘Rio Paralympics is another highlight. I had 

two really good races to win silver twice. 

I had one unfortunate race but that just 

added fuel to fire.’ 

The unfortunate race Donohoe speaks of 

was the road race at Rio where he was 

ridden into the wall and missed out on what 

was a likely gold medal.

Feature 


7 

While the postponing of the Tokyo 

Paralympics will push back Donohoe’s 

pursuit of a gold medal it’s not changing his 

training schedule. He started his preparation 

in October last year and doesn’t plan to take 

a breather. 

‘The fact that the games are postponed 

now, I'm not upset with that because that 

gives me an extra year to improve as a 

cyclist and to work on the goals that I 

want to work on. Because cycling is a 

compounding sport, the more training you 

do the better you get so in years’ time, I'll be 

a year better than I am right now. 

‘Going into the preparation of it is, is like 

a rabbit hole of everything. We've been 

working on aerodynamics a lot, we've been 

working on my physiology. 

It’s a more complex preparation for 

Donohoe because of the two very 

different types of events he races in at the 

Paralympics. 

‘I'm training for a four-and-a-half-minute 

event in the first week of the games, and 

then a two hour event in the last week of 

the games, so that's the challenge of Tokyo 

because each World Championships I go 

to, I get to specialise and focus on the 

event that I'm competing in at that World 

Championships and the demands of that 

event, whereas Tokyo, a good analogy is I 

have to be a good 800 metre runner and a 

good marathon runner. 

‘I can't wait to be given the 

opportunity to go back and 

achieve that goal.’ 

‘One, you have to be really big, really 

powerful, really explosive and the other, you 

have to be able to go really hard for 100 

kilometres. So one's completely endurance 

and one's completely anaerobic.’ 

It’s a challenge but it’s one Donohoe thrives 

on. 

‘I really like thinking about the approaches 

and addressing the training and figuring out 

the puzzle. And then seeing the differences.’ 

For now, Donohoe will continue with his 

training, spending between 25 and 30 hours 

a week in the gym and on his bike. He’ll ride 

anywhere from 650 to 800 kilometres in a 

week, breaking up the kilometres of road 

with some riding on dirt roads and mountain 

biking to keep himself mentally fresh. 

Despite his impressive list of achievements, 

Donohoe still has plenty he wants to achieve, 

with a Paralympic gold medal at the top of 

the list. 

‘That's something I should have won and 

didn't win and that's a real redemption point 

for me. It's unfulfilled. And I can't wait to be 

given the opportunity to go back and achieve 

that goal. 

‘Not saying that it's going to come at Tokyo, 

hopefully it does, but there's always a chance 

it doesn't so if it doesn't, I'll just look towards 

Paris. But I would like to think that I don't stop 

until I get that gold. And then I mean, the 

world of professional cycling is so vast. 

‘The sky's the limit there. There's always 

competitions and events and different levels 

that you can get to. But I just love cycling. 

‘So, it's not about what level of competition I 

get to or tick off. It's about racing my bike and 

I think that's something I'll do hopefully, for 

many, many more years or at least until I get 

bored of it.’ 

Editor’s note: the 2020 Tokyo Paralympic Games have 

been rescheduled to 2021. 

Despite his impressive list of accomplishments, 

there's still plenty more Alistair Donohoe wants to 

achieve, with a gold medal at the top of that list. 

Image: Supplied.

8 informonline.org.au 

Feature 

Australian 

Paralympian Legends 

Daphne Hilton 

Daphne Hilton became a paraplegic after a horse-riding accident 

when she was 17. She would go on to be one of the most 

accomplished Australian athletes of all time. 

Hilton was the only woman in the 1960 Australian Paralympics team. 

Australia won ten medals in 1960 and six of them were Hilton’s. 

She won two gold medals in swimming, three silver in archery and 

athletics and bronze for shot put. 

Above: Daphne Hilton in 1964. 

More medals would follow at the 1964 and 1968 Paralympics. 

Across the three games, Hilton set a record that is unlikely to ever 

be broken. She won 14 medals in five different sports—athletics, 

swimming, archery, table tennis and fencing—across three 

Paralympic Games. An incredible feat. 

Kevin Coombs OAM 

Kevin Coombs’ contribution to raising the profile of athletes with a 

disability makes him an all-time great. 

Coombs’ was the first Indigenous athlete to represent Australia 

at either a Paralympics or an Olympics. He played wheelchair 

basketball at five Paralympic Games. He was captain of the 

Australian men’s wheelchair basketball team in 1972 and 1984 and he 

was captain of the Australian Paralympic Team in 1980. 

In 2016 Paralympics Australia created a special award named in his 

honour: the Uncle Kevin Coombs Medal for the Spirit of the Games 

Award. 

Above: Kevin Coombs OAM at the 

1960 Paralympics opening ceremony. 

Louise Sauvage OAM 

Bursting onto the world stage at just 16, it was clear from the 

beginning that Louise Sauvage was going to be a star. 

Sauvage won nine gold medals and four silver medals at four 

Paralympic games between 1992 and 2004. At the 1996 Atlanta 

Paralympic Games, she won four gold medals and broke two world 

records. 

Sauvage changed wheelchair racing forever. She dominated the 

sport for more than decade and in doing so raised the profile of 

Paralympic athletes around Australia and the world. More than that, 

as one of the first professional athletes with a disability, Sauvage 

changed public perceptions of Paralympic sport and athletes. 

Above: Louise Sauvage OAM in action.

Feature 


9 

Left: The 1964 Australian 

Paralympic team is 

addressed by George 

Bedbrook. 

A BREIF HISTORY OF 

The History of 

the Paralympics 

The beginning of the Paralympics as we 

know them today can be traced to one man 

and one hospital. Dr Ludwig Guttman and 

the Stoke Mandeville Hospital. 

In 1944, during WWII, the British Government 

asked Dr Guttman to open a centre for 

people with spinal injuries. Guttman 

believed strongly in rehabilitation for people 

with spinal injuries and in the possibility of 

integration with the wider community. One 

of the ways Guttman pursued rehabilition for 

people with spinal injuries was sport. 

In 1948, he took it one step further. On 

July 29th, as the Opening Ceremony of 

the London Olympic Games was taking 

place, Guttman organised a competition 

for wheelchair athletes at the hospital. He 

called them the Stoke Mandeville Games. 

In these first games, 16 men and women 

took part. Four years later, in 1952, Dutch 

ex-serviceman joined, and the Stoke 

Mandeville Games became the International 

Stoke Mandeville Games which, by 1960, 

would be the Paralympics. 

The 1960 Rome Paralympics were the first 

Paralympic Games. There were 400 athletes 

from 23 countries competing and the games 

were no longer just for war veterans. 

The development and expansion of the 

games continued. By the 1976 games, the 

Paralympics were open to all athletes with 

disabilities, not just those using wheelchairs. 

In 1976, 1600 athletes for 40 countries 

competed. 

PARALYMPICS 

Australia’s involvement with the Paralympics 

is thanks to one man: Sir George Bedbrook. 

Bedbrook studied medicine at Melbourne 

University in Victoria. After graduating, 

he travelled to England where he spent 

some time at the Stoke Mandeville Hospital 

studying under Sir Ludwig Guttman. 

Back in Australia, and no doubt inspired by 

Guttman, Bedbrook established Australia’s 

first spinal injury centre in Perth in 1954. 

There, he revolutionised the treatment of 

spinal injuries in Australia. He included 

sport and exercise as part of rehabilitation 

programs for people with spinal injuries and 

held hospital sports day. 

In 1960, it was Bedbrook who arranged 

for an Australian team to go to the first 

Paralympics. Later, he would serve as the 

Team Leader and Medical Officer for the 

1964 Paralympic Games in Toyko. 

From humble beginnings with only 16 

athletes in 1948, the Rio Paralympics in 2016 

featured 4342 athletes from 159 countries. 

They competed in 528 events across 22 

sports. 

Below: Dr Ludwig Guttman with Dr Yutaka Nakamura. 

Both men were influential in the development of the 

Paralympics.


The Secrets 

of Social Skills 

The Secret Agents Society is an innovative program helping children 

to learn about and develop social and emotional skills. Inform caught 

up with experienced Autistic Spectrum Disorder consultant, teacher 

and trainer Sarah Hampton to learn more about the program. 

Walkie talkies, secret codes and spy 

missions are just some of the tools the 

Secret Agents Society uses to help children 

with autism to develop their social and 

emotional skills. 

An evidence-based, multimedia program, 

the Secret Agents Society is aimed at 

children aged between 8 and 12. The 

program uses a combination of computer 

games and interactive sessions that involve 

a range of different games, including 

cooperative games, that are designed to 

develop social and emotional skills. 

Sarah Hampton, who runs Autism 

Consultancy Services, has been running 

Secret Agents Society groups since 2018 

and says that while it doesn’t work for 

everyone, for those it does work for it ‘really 

does make a difference’. 

‘I’ve had moments where a student with 

autism looks up and me and goes “Oh, I get 

it now. That’s why they do that”. It’s really 

amazing,’ Ms Hampton said. 

Secret Agents Society works to help 

children with autism — as well as children 

with anxiety disorders, ADHD, anger 

management difficulties and other 

undiagnosed challenges with team work, 

making friends or staying calm — to learn 

about social interaction. 

‘The world we live in is not black and 

white. At all,’ Ms Hampton said. ‘The world 

we live in is entirely dependent on social 

interaction. 

‘The purpose [of the Secret Agents Society 

program] is to teach children about social 

interaction and to teach them how to 

socially interact. 

‘We’re constantly encouraging them to 

be curious about people and it’s that 

curiosity that helps us to understand social 

interaction. 

‘The world we live in is 

entirely dependent on social 

interaction.’

Feature 


11 

‘It’s all about creating young people that are 

productive and have the capacity to be able 

to go to work or to school, go to university 

and just generally engage with the world,’ 

Ms Hampton said. 

A number of university and community trials 

have already proven the effectiveness of the 

program which was developed by Dr Renae 

Beaumont and last year celebrated its tenth 

birthday. 

According to the Secret Agent Society 

website, the program can build capacity in a 

range of different areas, including: 

• The ability to recognise emotions in 

themselves and in others 

• The ability to express their feelings and 

to cope with anger and anxiety 

• The ability to communicate and play with 

their peers 

• The ability to build and maintain 

friendships 

• The ability to cope with mistakes and 

to understand the difference between 

accidents and jokes 

Children doing the Secret Agents Society 

program receive a pack that includes 

a parent’s resource book, a teacher’s 

resource book, and a resource book for the 

children. They also receive a wallet of social 

stories about how to join a conversation, 

how to make friends and what to do if you 

need help. All of this is alongside a login 

for an online computer game which aims to 

teach children about facial expressions, how 

others may react and also about their own 

feelings and responses. 

Nine-year-old Tegan, who is diagnosed 

level two ASD and ADHD, took part in the 

program last year in a group organised by 

Ms Hampton. 

‘[Tegan’s] psychologist and her paediatrician 

both recommended the Secret Agent 

Society as a good introduction to the 

unwritten rules of social interaction that 

the rest of us just kind of absorb and learn,’ 

Tegan's mother, Serren explained. ‘That's 

why we decided to do the course.’ 

Serren said that Tegan often has trouble reading 

body language, recognising emotions in others 

and maintaining reciprocal social interactions, 

but that the Secret Agents Society had made a 

difference to her social skills. 

‘She's definitely got a better idea of reading 

body language and non-verbal signals from 

people by their expressions or their body 

language of how they are feeling or responding 

to her or the situation that they are all in,’ Serren 

said. 

‘So she's a lot better at picking up those signals. 

Which has made life a lot easier for her as well. 

‘It was taught in a way Tegan really enjoyed, 

very interactive classes where they did lots of 

activities. It's not like a lecture. They were using 

walkie talkies and whispering across rooms and 

making paper airplanes and playing with slime. 

‘She looked forward to going, which to us was 

really positive,’ Serren said. 

Sarah Hampton is an experienced Autistic 

Spectrum Disorder consultant, teacher 

and trainer who runs Autism Consultancy 

Services. You can find more information 

about the Secret Agents Society programs 

Autism Consultancy Services run here: 

www.autismconsultancy.com.au 

You can find more information about the Secret 

Agents Society here: www.sst-institute.net 

Secret Agents 

Society and the 

NDIS 

It is possible to get funding for the Secret 

Agents Society through the NDIS. The 

program supports children in their social 

and emotional goals as well as being a 

capacity building program. Some of the 

areas in which the Secret Agents Society 

builds capacity include: 

• Improved daily living skills 

• Community participation 

• Improved relationships

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When Simple 

Changes Matter 

Most At Work 

To deliver nothing but the best matters the most to Shane when 

it comes to doing his job. But a progressive loss in central vision 

meant his ability and confidence to perform were impacted 

and he needed support to continue at work. That’s where 

JobAccess comes in. 

For Shane Somerville, providing support and 

value to his clients and employer at the highest 

possible level is exceptionally vital. 

As the head of managed services at audiotechnology 

provider Insight Systems, Shane 

is directly responsible for managing highvalue 

accounts and maintaining customer 

relationships. 

His role sees him regularly interact with clients 

and suppliers, secure new business, manage 

customer contracts, deliver presentations to 

internal and external stakeholders, as well as 

travel interstate and overseas to source new 

technology. 

Developing and sustaining long-term 

partnerships are critical as it translates into high 

revenue. For Shane, it’s more than that. ‘Making 

a difference to our clients’ environment, so their 

customers are happy, means a lot to me,’ he 

says. ‘I enjoy working with people and ensuring 

their outcomes are best met.’ 

Senior HR advisor Cornelia Szeszeran 

adds, ‘Shane has established great working 

connections with our clients and productive 

relationships with our internal teams based 

onsite and offsite.’ 

Over recent years, Shane developed Cone 

Dystrophy and progressively lost his central 

vision. It impacted his ability to perform some 

core components of his role. 

‘What we take for granted is reading and 

reviewing information so easily. Losing the 

ability to read affected my confidence,’ Shane 

explains. ‘Not being able to read the agenda 

or presentations during meetings meant 

my contribution was being compromised. It 

resulted in a level of frustration and anxiety and 

impacted my participation. I wasn’t able to put 

my best foot forward.’ 

Cornelia recounts, ‘When Shane shared his 

access requirements in a one-to-one meeting, 

I sensed the considerable challenge and stress 

he was experiencing. He loves his job and 

wanted to keep working at the same level of 

proficiency but needed support to do so.’ 

Shane learnt about JobAccess from a low-vision 

consultant at an open day, who recommended 

he contact the service. 

‘The result has been nothing short of amazing!’

Feature 


15 

Right: Shane Somerville using the technology 

JobAccess provided funding for. Image: JobAccess. 

With the support of his employer, Shane applied 

for the Employment Assistance Fund through 

JobAccess. Upon receiving the application, 

JobAccess organised a free workplace 

assessment to help identify and recommend 

simple modifications. 

‘The JobAccess adviser who oversaw my case 

was very responsive and understanding. From 

the point of having a conversation to something 

rocking up at the workplace, the turnaround time 

was swift,’ Shane says. 

Cornelia affirms, ‘There was a genuine sense 

of excitement when JobAccess responded so 

promptly. There was no challenge in working 

with them, and they were so compassionate and 

professional. Our excitement kept building as we 

saw the application process progress so quickly!’ 

Through JobAccess, Shane received funding 

for a ClearView Speech Magnifier which reads 

all types of text, a portable OrCam reader with 

wireless bluetooth-enabled earbuds, and a large 

monitor for his home office when working offsite. 

‘The ClearView Magnifier is fantastic as it 

helps me quickly and efficiently read and 

review contracts, tenders and other reports. Its 

touchscreen functionality allows me to navigate 

complex documents easily and skip to parts I 

need to assess. Reading documents was almost 

impossible, but now I can complete these tasks 

without having to ask others.’ 

Shane further adds, ‘The OrCam is life-changing! 

I attach the compact device to my glass frame, 

and it reads the information to me through 

a small speaker via a bluetooth earbud. It is 

ingenious for meetings as I can follow the 

agenda and read content displayed on screens. 

‘It’s hard to understand 

the impact when we lose 

the subtleties in how we do 

our job. Shane was starting 

to doubt himself, but the 

supports from JobAccess 

have empowered him.’ 

‘I also use it during presentations where the 

OrCam reads the slide notes to me. The best 

part is no one else can hear that, and I can 

deliver the presentation more naturally. Before 

the OrCam, these tasks were simply out of 

reach and caused much anxiety and stress, as 

I found it challenging to present to groups and 

not be able to read.’ 

Cornelia explains, ‘It’s wonderful to see Shane 

in his true spirit with renewed confidence. You 

can notice it when he is interacting with people 

around him. He feels reassured that he can 

continue performing his job as he had before. 

‘It’s hard to understand the impact when we 

lose the subtleties in how we do our job. Shane 

was starting to doubt himself, but the supports 

from JobAccess have empowered him. 

‘One significant change I see in Shane is he 

has become more comfortable in sharing 

information about his condition, which is not 

common. He talks about it more openly now, 

and we don’t see it as a disability because he 

doesn’t either,’ Cornelia says. 

Shane concludes, ‘My concern was I wouldn’t 

be able to deliver the job in the long term. But 

these supports have removed my worry and 

stress, made me more productive and positively 

impacting the business. 

‘The assistance from JobAccess and my 

management has been remarkable. It’s taken 

a mental leap to walk up and articulate what 

the issues are, so I can fully participate in 

the workplace as a valued member of the 

organisation. It’s great to have the confidence to 

say ‘yes, I can do this’ and take back control in 

every aspect of my work and personal life.’ 

For more information about JobAccess and the 

Employment Assistance Fund visit www.jobaccess.gov.au


NDIS Feature 

NDIS 101: 

Supporting 

Evidence 

NDIS SERIES 

SUPPORTING EVIDENCE 

When you’re applying for access to the NDIS, you may have 

to provide evidence of your disability. This evidence helps 

the NDIA to assess your eligibility. It can take several different 

forms including letters from your GP, assessments or reports 

from allied health professionals and letters from your support 

providers, carers or family. Providing this evidence can seem 

like a daunting process, but we’ve pulled together some 

information that can help to make it smoother. 

What is good evidence? 

The supporting evidence you provide to the NDIA is what they use to decide 

on your eligibility so it’s important to make sure you provide the best evidence 

you can. So, what does the NDIA consider good evidence? 

Good evidence is: 

• recent 

• confirms your primary 

disability 

• is completed by 

a treating health 

professional relevant to 

your primary disability 

• confirms how your 

disability impacts on 

various areas of your 

life 

• includes and describes 

any previous 

treatments and the 

results of those 

treatments 

• includes and describes 

any future treatments 

and the expected 

results of such 

treatments

NDIS Feature 


17 

Who can provide evidence? 

Evidence can take many forms. In terms of 

health care professionals, some examples 

include: 

• GP 

• Occupational therapist 

• Speech pathologist 

• Physiotherapist 

• Psychologist 

• Orthopaedic surgeon 

This is not an exhaustive list. The NDIS 

provides a list of evidence by disability that 

can help you to determine who is the best 

healthcare professional to provide your 

supporting evidence. 

Depending on your disability, a GP 

can provide a letter detailing your 

diagnosis, the impact your disability has 

on your life and the supports you need. 

Reports from therapists can include the 

impact your disability has on your life 

and recommendations for supports. 

Assessments are generally conducted by 

occupational therapists, speech pathologists 

or psychologists. 

The health professional who provides you 

with supporting evidence can do so in 

several ways. 

They can: 

• Complete the NDIS Supporting Evidence 

form 

• Complete the NDIS Evidence of 

Psychosocial Disability form 

• Complete Part F of the Access Request 

form 

• Provide existing assessments and 

reports or letters that demonstrate the 

ways your disability impacts your life 

Evidence can also come from letters or 

reports from support providers, carers or 

family. While there are no formal guidelines 

for what these letters or reports look like, 

some examples of what they could cover 

include: 

• The kind of care and support provided 

by family 

• The impact that care has on family 

• Whether that family member can 

continue to provide care 

Other forms of evidence can include home 

modification assessments, mental health 

reports, and medication charts. 

Tips and 

advice 

• The more information you can 

provide the better 

• If you need some additional help 

in preparing your evidence, speak 

to your Local Area Coordinator 

or LAC or your Early Childhood 

Partner 

• The NDIS provides a handy tool 

that lists types of disability and the 

best supporting evidence to use 

by type of disability. You can find 

this list on the NDIS website. 

Some useful tools for preparing your 

supporting evidence include: 

• The World Health Organisation’s 

Disability Assessment Schedule 

• The Australian Mental Health 

Outcomes and Classification 

Network’s Life Skills Profile 

• And the Australian Mental Health 

Outcomes and Classification 

Network’s Living in the Community 

Questionnaire 

• The Camberwell Assessment of 

Need or CAN


Andi Snelling 

Creative 

Possibilities: 

Andi Snelling on art and disability 

Andi Snelling is an award-winning performer, writer and theatre-maker living 

with Lyme disease and co-infections. Last year, she received an Arts Access 

Australia Travel Grant to attend Meeting Place, a forum hosted by Arts Access 

Australia for artists with disability. Andi loves tea, baths and being alive! Her 

favourite thing to do is smile. 

Inform caught up with Andi to discuss her work, the importance of forums like 

Meeting Place and how her disability informs her performances. 

How did you get into performing? 

I think I was just always accidentally 

performing; creating choreographies as a 

child and making little videos as a teenager. 

I used to move buttons about on a table as 

if they were on a stage, creating different 

formations and patterns. I grew up dancing 

and always landed the comedy roles. 

Although I didn’t actually recognise it until I 

finally went to drama school in my mid-20s, 

I was clearly always performing in one way 

or another and it was pretty inevitable that 

this is where I’d end up. At my recent 20 year 

high school reunion, no one was surprised 

to hear my career was acting, even though it 

surprised me initially!

Feature 


19 

Any particularly memorable gigs? 

So many. I’ve been lucky enough to do such 

a wide variety of jobs across many different 

performing genres around the world: from 

performing in a musical on London’s West 

End, to playing Edith in Picnic at Hanging 

Rock for BBC Radio 4 (yes, I got to scream 

“Mirandaaaaa!”), to performing as Peppa Pig 

and Dora the Explorer (the only times in my 

life I’ve been celebrity mobbed by 5-yearolds), 

to performing on a train in Germany for 

3 months, to a recurring role on Neighbours, 

and being the voice of Qatar Airways' in-flight 

entertainment and much, much more. Every 

gig has its quirks. But definitely, the most 

fulfilling have been my three solo shows: 

#DearDiary, Déjà Vu (And Other Forms of 

Knowing) and Happy-Go-Wrong. It’s been 

quite a ride so far. 

You were a recipient of an Arts Access 

Australia Travel Grant to attend Meeting 

Place, a forum hosted by Arts Access 

Australia that brings together local, national 

and international arts and cultural leaders, 

arts workers and artists with disability, to 

present, perform, discuss and debate the 

latest in access and inclusion in the arts. 

What was the experience of attending 

Meeting Place like? 

It was my first time attending Meeting 

Place and was a highlight of my year last 

year, without a doubt. The greatest thing 

it gave me was an instant environment of 

understanding, acceptance and inclusion 

like I hadn’t felt before. Having an invisible 

illness/disability often means people do not 

take my situation as seriously as it needs 

to be taken. Meeting Place is a container 

for shared language, experience and damn 

good art! I met a lot of very talented artists 

and arts workers doing great things in our 

industry. It really spurred me on to take 

pride in my vastly changed body. A personal 

highlight for me was being invited to speak 

on a panel about my solo show Happy-Go- 

Wrong and running a workshop as part of the 

incredible Crip the Stage program. 

‘I found little ways to get back to 

creating and eventually, these little 

ways culminated in what is now my 

award-winning solo theatre work’ 

Why are events like Meeting Place 

important for cultural leaders, arts workers 

and artists with disability? 

Because they are safe spaces for us to 

come together and really nut things out in. 

Our voices can be truly heard and we can 

challenge each other too in areas where 

we may disagree. Disability is diversity 

incarnated and I find such events continue 

to wake me up to how differently all human 

bodies function and where our points of 

intersection and indeed, diversion lie. I also 

find these events are often important places 

for celebration of the incredible experiences 

and perspectives that artists with disabilities 

have to offer the world. They also show me 

that I can achieve much more than I thought 

I could due to my ongoing illness. 

How has your experience with chronic 

illness impacted and/or influenced your 

work? 

Having lived most of my life as a healthy, 

fully abled-bodied performer, there has 

been a definite transition period for me, in 

terms of learning how my artistic process 

can best support the needs of my illness. 

For several years, I had to stop performing 

altogether and these were very tough on my 

psyche. But, slowly but surely, I found little 

ways to get back to creating and eventually, 

these little ways culminated in what is 

now my award-winning solo theatre work 

Happy-Go-Wrong. What has surprised me 

most through all this has been how much 

my illness ‘limitations’ have, in fact, become 

new creative possibilities which I otherwise 

would not have discovered. I also believe I 

have a lot more depth and integrity in what 

I create; every word, every movement and 

every breath counts now like never before. 

On the flip side, the reality is that I still often 

struggle to accept my circumstances and 

face tremendous barriers as an artist more 

so now, both physically and especially, 

financially. The majority of my life is still 

spent treating and managing Lyme disease 

and I sometimes despair that I may never 

be able to make the amount of art I wish 

to and in the ways I wish to. It’s a constant, 

ongoing obstacle course which I pull myself 

through and I try to keep reminding myself 

that what I have managed to achieve under 

such trying circumstances has been pretty 

incredible so far. I have a lot of hope.


‘...the process of creating the 

show, as well as the show 

itself, has ended up playing a 

huge role in me turning my 

life around from the ground 

up. Art is powerful like that.’ 

Can you tell us about your 2019 Melbourne 

Fringe Festival Show, Happy-Go-Wrong? 

Happy-Go-Wrong is a solo physical theatre 

odyssey which is a celebration of being 

alive. It explores my journey through Lyme 

disease using clowning, dancing, storytelling 

and a lot of verbal and visual metaphor. 

It is a deeply raw and personal show, but 

with universal themes of fate, mortality and 

resilience, which all humans experience to 

varying degrees. The show premiered at 

Melbourne Fringe 2019, where it had a fully 

sold-out run and encore season and won 

an award. This was a powerful way to return 

to the stage for the first time in many years. 

The show has also been nominated for two 

Green Room Awards for Best Performer 

and Best Writing in the independent theatre 

category for 2019, which has very much 

blown my socks off. I have also just returned 

from New Zealand Fringe 2020, where the 

show enjoyed beautiful full houses and won 

another award. My dream is to continue 

working on the show and touring it as far 

and wide as possible, as best as my health 

allows. 

What inspired Happy-Go-Wrong? 

My need to rescue myself from the darkest 

depths of despair during a time when it felt 

like my life was over due to Lyme disease. 

What has resulted is that the process of 

creating the show, as well as the show itself, 

has ended up playing a huge role in me 

turning my life around from the ground up. 

Art is powerful like that. I am very proud of 

what I have achieved as there was a lot of 

struggle along the way and the show very 

nearly didn’t happen many times over. 

What are you working on next? 

I am someone who is pretty much constantly 

creatively inspired so I have at least 10 

show ideas swirling around my head! But, 

for now, I will continue to focus on Happy- 

Go-Wrong in terms of my theatre work. I do 

also have a book in the pipelines, which is 

a delightfully slow-burn project, something 

which my illness experience has taught me 

to embrace. I also hope to get back to doing 

plays again in the near future. 

All images supplied. 

You can learn more about Andi and her work at 

www.andisnelling.com

Feature 


21 

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Providing 

Hope 

Founded more than forty years ago, the Prader-Willi Syndrome 

Association of Victoria has a long history of advocacy, awareness, 

education and support. One that they continue to build on today, creating 

new support networks and working to raise awareness of the rare and 

complex Prader-Willi Syndrome. 

The Prader-Willi Syndrome Association of 

Victoria is running an awareness campaign this 

May to shine a spotlight in the challenges faced 

by people living with Prader-Willi Syndrome. 

The campaign, called 15 for 15, will see 

participants take part in a 15-hour hunger 

challenge. 

‘It's about people challenging themselves 

for something for 15 days,’ said Renee Di 

Genova, President of the Prader-Willi Syndrome 

Association of Victoria. 

One of the tell-tale signs of Prader-Willi 

Syndrome is hyperphagia or an insatiable 

hunger. 

‘The International Prader-Willi Syndrome 

Organisation describes it as like a starvation 

syndrome, where you just constantly feel like 

you're starving.’ Ms Di Genova said. 

‘Last year, we had people cooking only orange 

foods for 15 days. We had people doing gym 

challenges for 15 days. But this year we're honing 

in on the hunger side of it. We're challenging 

people to do a 15-hour hunger challenge and to 

upload videos about how they’re feeling during 

that time. 

‘One of our board members did the 15-hour 

challenge. And he uploaded a couple of videos 

about how he felt during that time. Not only 

hungry, but the anxiety and the focus on food 

and feeling fuzzy and those thoughts and 

feelings that our children and adults experience 

every single day all the time.’ 

Prader-Willi Syndrome is a rare and complex 

lifelong condition with no known cure. It’s also 

difficult to describe succinctly what the condition 

is. Some common characteristics include small 

hands and feet, small stature, low lean body 

mass, weak muscles, insatiable hunger, obesity 

and anxiety-driven behavioural outbursts. 

‘It's extremely complex. It's not just one thing. 

And that's the thing with Prader-Willi Syndrome 

that people find so hard to get their head around 

the fact that it is such a complex condition and it 

just can't be summarized,’ Ms Di Genova 

The Prader Willi Syndrome Association of 

Victoria was established in 1978 when a group 

of seven families with family members diagnosed 

with Prader-Willi came together to talk about 

the challenges they were facing. Ms Di Genova 

explains that the original goals of the association 

were to support those living with Prader-Willi 

Syndrome and their families, to raise awareness 

of the syndrome, to educate professionals and to 

grow the membership of the association.

Feature 


23 

‘There wasn't enough information out there. 

There wasn't enough support for these families 

and they just wanted to do something to help 

people in their situation,’ Ms Di Genova said. 

Many of the goals of the original families 

are reflected in the work of the Prader-Willi 

Syndrome Association of Victoria today. 

‘We do advocacy, awareness, education and 

support. And that's on the ground support. 

So, we do educational workshops to families— 

which is something that we provide ourselves— 

and that's about Prader-Willi Syndrome and how 

to handle certain behaviours and what to expect 

and things like that. We also provide education to 

professional organizations such as schools, day 

care programs, group homes and things like that 

to talk about how best they can support someone 

with Prader-Willi Syndrome.’ Ms Di Genova said. 

In addition, the association advocate to local 

governments and federal government and 

collaborate on research projects. They’re also 

launching a dedicated telephone counselling 

service that will be available to families and those 

with Prader-Willi Syndrome, for support, including 

financial support. They also provide peer-to-peer 

support events such as their Christmas party, 

family days and an annual camp, which is the 

associations biggest event of the year. 

‘We run it a little bit different to other camps 

that are out there. We involve the whole family 

unit. It's not just the person with Prader-Willi 

Syndrome. 

Below: The 2019 Prader-Willi Syndrome Association 

of Victoria Christmas Party. Image: Supplied. 

‘The camp is designed to be inclusive… but it's 

also around support for the family. We provide 

educational pieces to the family as well by 

professionals, so there'll be guest speakers 

every day that come in and talk. Last year we 

had a gut health specialist. We also had a person 

from Carers Victoria come and talk to the families 

about looking after themselves. 

‘And it's for all age ranges we have. I went when 

my son was one-and-a-half. And we have adults 

there that come every year that are in their 40s.’ 

For the Prader-Willi Syndrome Association of 

Victoria, the goal is a world where people with 

Prader-Willi Syndrome live a full and inclusive life. 

‘When we talk about full, we're talking about 

a really full life. That they can be included in 

everything and anything they want to be. They 

can have every opportunity that everyone else 

has afforded to them. That’s what we are trying 

to achieve. 

‘We try and provide hope to families that are just 

feeling really hopeless in their journey. Anything 

that we can provide to them that can help them 

along, that's what we do. 

‘Obviously as a family, just finding out about 

Prader-Willi Syndrome can be extremely 

daunting, and you read a lot of messages online 

and it's very negative. But we can provide some 

hope and let them know that it's not all doom 

and gloom. Our kids are just so resilient and they 

bring us so much joy and yes, it's challenging, 

but it's such an amazing thing to see them grow 

and achieve.’ 

For more information on the 

Prader-Willi Syndrome Association of 

Victoria or the 15 for 15 campaign, visit 

pwsavic.org.au


Feature 

AUSLAN 101 

Auslan is short for Australian Sign Language. Sign language is a visual 

type of communication that uses hand, arm and body movements to 

express meaning. Uniquely Australia, Auslan was recognised by the 

Australian Government as an official language in 1991. 

Auslan has a long history in Australia. It wasn’t 

invented by any one person but instead has grown 

and developed via the community and in response 

to those who use it. 

However, its origins can be traced to sign 

languages brought to Australia in the 19th century. 

Auslan evolved from early forms of British Sign 

Language used in the 1800s. Irish Sign Language 

also had some influence on the development of 

Auslan. 

Sign language possesses the same kind of 

complexity as spoken language and can convey 

and express nuance and subtlety. 

However, Auslan is not just English using signs but 

its own unique visual language. In fact, Auslan uses 

a variety of elements to convey meaning. From the 

handshapes—there are 38 major hand shapes with 

28 variants—to the location of the signs in relation 

to the body, head, arm and hand movements, the 

orientation of the sign and facial expression. 

Today, nearly 20,000 people use Auslan every day. 

And the language has developed some uniquely 

Australian characteristics.

Feature 


25 

‘Sign language 

possesses the same 

kind of complexity 

as spoken language 

and can convey and 

express nuance and 

subtlety.’ 

There are many ways you can learn 

Auslan. Some community organisations 

offer classes, check locally. Many further 

education or TAFE institutions also offer 

opportunities to learn Auslan. 

For more information, you can contact the 

following organisations: 

Expression Australia formally 

Victorian Deaf Society 

Telephone: (03) 9473 1111 

TTY: (03) 9473 1199 

Telephone: (03) 9473 1186 (Sign Language 

Co-ordinator) 

Website: www.expression.com.au 

Deaf Australia 

Sydney Office Telephone: (02) 9871 8400 

(TTY only) 

Brisbane Office Telephone: (07) 3357 8266 

(TTY) or (07) 3357 8266 (Voice) 

Website: deafaustralia.org.au 

Auslan Connections (Interpreting Service) 

Victoria 

Telephone: 1800 287 526 or (03) 9473 1117, 

(03) 9473 1143 (TTY only) 

Website: www.expression.com.au/ 

interpreting 

Above: Auslan fingerspelling signs. 

Image: Sign Language Forum.

NDIS Feature

NDIS Feature 


27


News 

Arts Awards 

Celebrate Excellence 

An artist and illustrator, the co-founder 

of one of the country’s only disability 

led theatre company’s and a passionate 

theatre maker were all recognised at the 

National Arts and Disability Awards. 

AUTU M N EDITIO N 

Dion Beasley was awarded the Australia Council 

National Arts and Disability Award (Emerging Artist). 

Beasley, a 28-year-old Alywarr man is an awardwinning 

artist and illustrator. 

Janice Florence was awarded the Australia Council 

National Arts and Disability Award (Established Artist). 

Florence is the artistic director and co-founder of 

Weave Movement Theatre, a company based in 

Melbourne. She is a pioneer in inclusive dance and 

physical theatre. 

Brisbane-based theatre maker Madeleine Little 

was awarded the Arts Access Australia National 

Leadership Award. Alongside making theatre, Little 

is also researching accessible theatre practice at the 

University of Southern Queensland. 

The Australia Council for the Arts partnered with Arts 

Access Australia for the first time last year to present 

the awards. 

Inclusive Little 

Athletics 

Little Athletics will develop an 

Australian-wide inclusion program 

to enable children with disabilities to 

participate in community-based Little 

Athletic activities. Funding from the 

NDIA will allow the organisation to 

redesign their traditional competitions 

to ensure children with a disability 

are not excluded or segregated. An 

education program is also a part of the 

project as well as upskilling for centres 

around the country. 

Funding for More 

Effective Care 

The Council for Intellectual Disability has partnered 

with the Australian Government to deliver a program 

aimed at ensuring Australians with an intellectual 

disability received greater support in the health 

system. The Primary Care Enhance Program aims to 

increase the skills and ability of GPs and other allied 

health professionals to provide effective care for 

people with intellectual disabilities. Alongside supports 

and resources for GPs and health professionals to 

build their capacity to care for people with intellectual 

disabilities, the Program will also fund health promotion 

information for people with intellectual disabilities and 

their families and support networks.

News 


29 

Plan to End Barriers to Work 

People with Disabilities Australia (PWD) have launched a $100 million 

proposal to help more people with disability find work and stay in work. 

The proposal calls on the federal government 

to develop a National Jobs Plan for people with 

disability that looks at the obstacles and barriers 

to employment. The proposal also calls for 

funds to transition people with disabilities out of 

sheltered workshops and for a national advertising 

campaign to tackle discrimination in the workplace 

as well as increased funding for JobAccess. 

Jeff Smith, CEO of PWD said that the proposal was 

a ‘down payment in the economic future of people 

with disability across Australia’. 

‘We know that people with disability find that 

outdated attitudes, a lack of flexibility and 

accessibility can make getting and keeping a job 

incredibly hard,’ Mr Smith said. 

The numbers around people with disability and 

work are consistently disappointing. Of the people 

with disability of working age, only 53% are in paid 

work. This compares to the 82% of non-disabled 

people of working age in paid work. People with 

disability face discrimination, a lack of accessibility 

and flexibility according to PWD. 

‘We believe that the measures outlined in our 

plan will contribute significantly to removing the 

barriers people with disability face, and make it 

possible for many people with disability to enter 

and stay in employment,’ Mr Smith said. 

Greater Choice and More Flexibility 

NDIS participants can now enjoy greater flexibility and increased choice accessing 

transport funding. From March 1, 2020, participants have been able to flexibly 

use their core support funding to claim provider transport costs associated with 

transport to and from NDIS funded community-based activities. 

Minister for the NDIS, Stuart Robert said 

participants would now have a fairer and 

more consistent process to cover their 

transport costs with providers. 

‘This change will give participants more 

autonomy in their plans, and greater choice 

and control over the services and supports 

they need,’ Mr Robert said. 

‘These changes build on positive 

momentum in resolving the long-standing 

issues regarding the interface between the 

NDIS and transport supports,’ he said. 

‘As we deliver our plan for the final 20 

per cent of the NDIS we will continue to 

make considered changes that ensure 

the sustainability of the scheme while 

maintaining the core objective of choice and 

control for participants.’

30 informonline.org.au 

Feature 

The Science 

of Sleep 

Forty winks. A siesta or a catnap. Get some shuteye or catch some z's. 

We have plenty of words and phrases to describe sleep. But why do we 

sleep and how much sleep do we need to feel rested, refreshed and 

ready for the day?

Feature 


31 

Why do we sleep? 

Our body’s desire to sleep is controlled by 

the circadian and homeostatic processes. 

You’ve probably heard of the circadian 

process or the internal body clock as it’s 

often known. The homeostatic process 

refers to the way the pressure to sleep 

increases across the day and then 

decreases as we sleep. Both of these 

processes are influenced by our genetics 

but also by exercise, illness and our sleep 

patterns. 

We often think that when we sleep nothing 

much is happening. But that’s not quite 

true. As we’re moving through the cycles 

of sleep, our bodies are consolidating 

our memories, transferring our short-term 

memories to our long-term memory. But 

that’s not all we’re doing. Our bodies need 

sleep to repair and renew, to grow new 

muscle or tissue and to recover from the 

day’s activities. 

While science has yet to solve all the 

mysteries of sleep, we do know that it’s 

necessary to ensure we can stay healthy 

and well. 

How much sleep do we need? 

Many experts suggest adults need eight 

hours of sleep a night. The idea being that 

this is enough sleep to ensure you’re well 

rested. Of course, we’re all different and so 

while eight is the number usually suggested, 

some of us are good with only seven while 

others need nine. Children and teenagers 

generally need more sleep than adults. In 

addition, things like stress, illness or travel 

can influence the sleep you need. 

The most important thing is to make sure 

you get enough sleep to feel rested, 

refreshed, alert and ready for your day. 

Tips for 

a good 

night’s sleep 

Consistent and healthy sleep habits are a good 

way to help you get a good night’s sleep. The 

following tips may help you ensure you’re well 

rested. 

• Go to sleep and wake up at the same time 

every day. 

• In the four to six hours before bed, avoid 

caffeine and alcohol. 

• Avoid exercising within two hours of going 

to bed. However, exercise five to six hours 

before bed can help you sleep. 

• Avoid eating big meals in the two hours 

before going to bed. 

• Establish a relaxing bedtime routine. This 

could include a warm bath, some time 

reading or music. 

z 

z 

• Turn off any screens, including TVs, mobile 

phones, laptops and tablets a good thirty 

minutes before bedtime as the light emitted 

by these devises can trick your brain into 

believing that it’s still daytime. 

• If you can, keep your bedroom dark, quiet 

and at a comfortable temperature—not too 

hot and not too cold. 

If you’re struggling to get enough sleep or you’re not feeling 

rested and well regardless of how much sleep you’re 

getting, see your doctor. 

Please note the information supplied is general in nature. 

Please consult your medical practitioner for individual 

advice. 

z 

z

Independence Australia is a: 

NDIS approved provider 

TAC service provider 

DHHS service provider 

Our services include: 

In-home care 

Accommodation 

Psychology and counselling 

Case management 

Support Coordination 

Information 

Health care products and equipment 

1300 704 456 

service.enquiry@iagroup.org.au 

www.independenceaustralia.com.au 

independenceaust 

@independenceaus

Inform issue 30 - Autumn 2020

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