Source Kids Winter 2022 by Source Kids

ISSUE 31 / WINTER 2022

Is your child overscheduled?

PRODUCT REVIEW

WHEELCHAIRS THE L ATEST CEREBRAL PALSY RESEARCH

Gene Therapy

ENTERING A GOLDEN AGE

HOW TO FIX THE

Your voice: The results of our NDIS survey

Speech milestones: When to seek help

HOW TO WIN AT THE AAT

CARER ENTITLEMENTS: WHAT’S IN IT FOR YOU?

CONTENTS

39 How to WIN at

contents

WINTER 2022

THE L ATEST CEREBRAL PALSY RESEARCH

Gene Therapy

ENTERING A GOLDEN AGE

Your Thesurvey results of voice: our NDIS

Speech milestones: When to seek help

HOW TO WIN AT THE AAT

CARER ENTITLEMENTS: WHAT’S IN IT FOR YOU?

50 Speech milestones – when to seek help

54 Emotional regulation

story – every

Is your child

vote does matter

overscheduled?

Gene Therapy –

Comp corner

NDIS Survey – you

entering a

and free autism

share your stories

golden age

workshops

How to fix the NDIS

Kalarny beats

Entitlements –

the odds

what’s in it for you?

Restoring trust – Bill

Shorten’s vision for

Latest cerebral

Watches, reads

the NDIS

palsy research

and listen

Why therapy

Finding her voice by

Wheelchair

waitlists are so long

mentoring others

review

The impact of caring

HOW TO FIX THE

your hard

Connor’s

We Love

WHEELCHAIRS

Mum story – choose

product feature

5 Is your child overscheduled?

ISSUE 31 / WINTER 2022

PRODUCT REVIEW

the AAT

MAGAZINE HEAD OF CONTENT: Rebekah Devlin PRODUCT EDITOR: Kelly Wilton HEAD OF SALES & BUSINESS DEVELOPMENT: Matthew Rainsford, matthew@sourcekids.com.au // 0409 418 362

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4 SO U RCEKI DS .CO M . AU

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I SSU E 31 | WI N T ER 2022 5

WELCOME

The REAL impact of caring T Exhausted. It’s the word that came up repeatedly in our inaugural Source Survey. As did stressed, overwhelmed, anxious and isolated. A staggering 93 per cent of you say your health has suffered as a result of your caring role. And overall, you rated your happiness at just

7.4 out of 10.

6 SO U RCEKI DS .CO M . AU

hese figures show there is much to be done to address carer burnout. Because we are exhausted. Exhausted from fighting for our kids. Fighting the NDIS, fighting their school, fighting for them to find meaningful work, fighting for acceptance. We’re exhausted from two years of Covid, from lockdowns, from isolation due to immuno-compromised kids. Isolation that still hasn’t ended. Exhausted from trying to make telehealth work and from all the running around to the various appointments, from trying to squeeze our way onto waitlists. We’ve dealt with bushfires, floods and now mould, and frankly, a lot of us are at breaking point. Of course, we are incredibly grateful for the support offered by the NDIS. It is life changing for our kids. But that does not mean we need to sit quietly while all this is suddenly ripped away with widespread and unexplained cuts to plans. And if it hasn’t happened already, we are terrified that our child’s funding will be next. We are exhausted from having to review every plan. Overwhelmed at having to head to the Administrative Appeals Tribunal and fight the NDIA’s highly-priced lawyers, just to get the funding that we’ve spent thousands of our kids’ plans getting reports for… only for therapists’ recommendations to be totally ignored. We are outraged that the NDIA would rather spend $32 million on lawyers in just eight months to fight us, than give that money to NDIS participants.

Crashed out on the couch - how I fall asleep most nights.

If mum is broken, the whole family will soon be broken too. WE NEED HELP And when we say help, we mean actual, real-life help. Not yet another online course on techniques to deal with stress, or ways to find time for ourselves. These may as well be teaching us to fly to the moon! We need practical help. Support worker help _ 83 per cent of you think that having a support worker would have a tangible impact on improving your stress and mental health. And 45 per cent listed support workers as the most important thing you need in your plan that you currently don’t have/or don’t have enough of. There is no more frustrating phrase in NDIS land than “parental responsibility”. I want NDIS policy makers to spend a day with families across Australia and

Yet another surgery for darling Jake. Going above and beyond – Lara, our beloved support worker.

SOURCE SURVEY

How has your health suffered because of your caring role? “Family is at breaking point.”

tell us if they still think our request for assistance is merely parental responsibility. I want them to try and take both my autistic kids to the supermarket together. Take them anywhere together and see how that goes. Try holding on to one kid while the other one sprints away from you and crosses roads without looking. Or when one has a meltdown in the middle of a Bunnings carpark, and you have to abandon your child in a pram to stop your other child from being hit by cars while they lie screaming in the middle of the road. Maybe then they’ll understand our requests for a support worker. Or watch a mum deal with all that needs doing when their child is nonverbal, or PEG fed, or in a wheelchair. See how hard it is to take them to the toilet, how long it takes to hand feed them each meal. Try lifting your adult child and see what it does to your back after a while. Maybe then they’ll realise the phrase parental responsibility is beyond insulting. For too long, the needs of carers have been described as irrelevant when dealing with the NDIS. We’re not talking about support workers so we can go get our nails done, although really, what is so wrong with that? We’re talking about help so that

our lives actually function. We’re talking about lifting the load so we feel like we can breathe, so that we’re not in a constant state of flight or fight. Help so that our marriages survive. Help to be able to do the grocery shopping. Or eat a meal at a restaurant together. The family unit needs to be looked at as a whole. Because if mum is broken, the whole family will soon be broken too. It’s about fitting our mask first and being able to believe in a better future.

“I feel completely overwhelmed. Frustration and anxiety are chronic.”

“Chronic back pain. Various other minor injuries from manual load of caring.”

“My marriage has greatly suffered.” “Have had a full breakdown and was hospitalised.”

“Depressed and burnt out, IBS due to stress.”

“I have had a stroke. Husband left work due to stress.”

A GLIMMER OF HOPE That tiny ember may well be starting to glow a little brighter. We were heartened that Bill Shorten agreed to take part in our NDIS forum in the lead up to the election. We raised the issues of carer burnout, of plans being slashed, the case for support workers, for better training of LACs, particularly around rare diseases and for better wages for workers with disabilities. And he listened. You will find Mr Shorten’s plans for the NDIS on Page 14. We are hopeful that the change he spoke of can be implemented. Because right now, the NDIS is broken. This world-leading scheme that has brought so much to our community, is not working. It’s why we’re running four pages

of your entitlements in this magazine (pages 61-64), to highlight what financial and practical help is out there. We believe support workers are the answer to unlocking carer wellbeing, not just helping with our day-to-day stress, but alleviating financial burden by giving us the option to be employed, or work more hours _ 50 per cent of you said that having a support worker would allow you to work or work more hours. Support workers improve mental health, by giving us time. And heck, we might just even be able to get those nails done once in a while.

Bek

I SSU E 31 | WI N T ER 2022 7

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DEALERS AUSTRALIA-WIDE

E C R U SOSURVEY When the NDIS was introduced in 2016, it was lifechanging for people living with disability - providing dignity, security, assistance and independence.

ut in its most recent iteration, the NDIS has become onerous, daunting, unpredictable and seemingly mean-spirited. In the past 12-18 months, there have been substantial and wide-spread cuts to plans, with no reason given. People are being refused basic and necessary equipment such as wheelchairs, care and supported accommodation options have been denied as no longer being value for money, and the wild variance in plans between children with relatively similar needs is devastating, and infuriating. It seems to be pot-luck as to what plan you get. According to its own figures, the NDIS cut plans by thousands in 2021 – reducing by an average of four per cent. Prior to that, plans had increased every year. In 2021, the average plan was $68,000. But many get nowhere near this amount. These cuts are leaving people with no choice but to go through the lengthy Administrative Appeals Tribunal process. There were 4,656 applications for AAT reviews of NDIS decisions filed between July 1, 2021, and March 31, 2022, compared with 1,259 during the same period in 2020-21 - a 270 per cent increase.

10 SO U RCEKI DS .CO M . AU

ARE YOU SATISFIED WITH YOUR CHILD’S NDIS PLAN? But as we all know, our children are not numbers. These figures represent people. Our people. And their funding impacts us all. With this in mind, we commissioned the first ever Source Survey, to magnify your voices and advocate for change. Hundreds of people took part and the results were stark. • 61% said they were forced to choose between which services they used because of inadequate funding. • 94% said that their health suffered in their caring role. • 74% worried that their child’s lack of funding would have long term effects on their future. This is not easy reading, but this is your reality. We thank you all for bravely sharing your stories. By Rebekah Devlin

Extremely happy - 3.47% Happy - 22.77% Satisfied - 22.77% It's adequate - 26.24% Disappointed - 31.68% Extremely disappointed - 14.36% Unsure - 1.49%

Is your child's plan worth more or less than their previous plan?

→ 35.47% Same → 17.24% Less → 36.45% More

This is their first plan

→ 10.84%

YOUR SAY

Does the plan cover all the therapies you feel are necessary for your child?

UNSURE 8.87%

Yes

52.71%

38.42%

Are you forced to choose between which services you need because you do not have enough funding? Yes

61%

39%

WHAT IS THE MOST IMPORTANT THING YOU NEED IN YOUR PLAN THAT YOU CURRENTLY DON’T HAVE/OR DON’T HAVE ENOUGH OF?

YOUR SAY ON FUNDING

Support Worker hours “Increased as last plan was inadequate and a secondary disability was diagnosed.”

“There doesn't appear to be a fair level playing field. Cuts have been made without any real explanation.” “Capacity building supports reduced, 1:1 swimming lesson gap cut completely.”

“Everything has been halved total stuff up.” “An 8-month battle and appeal to tribunal, only then was funding increased but with plan expiring end of year, I’m terrified what that will mean. I’m not sure I have the mental capacity to fight.”

45.55%

Assistance with Social and Community Participation

Do you worry that your lack of funding will have a long-term impact on your child’s future?

Yes 74.36% No 14.36% Unsure 11.28%

31.41% Respite 29.32% Consumables 27.75% Social Programs 27.75% Assistive Technology 26.18%

35.08%

Capacity Building

All of the above

19.37%

YOUR FEARS FOR THE FUTURE “My daughter is very social and has no outlet for this. She will NEVER be able to join a sporting team, she NEVER gets invited to birthday parties and needs one to one support on any outings.”

“We were told early on by her doctors that if we received treatment early and worked hard, my daughter would likely have a “normal” life. We have watched her treatment get delayed over and over as we wait in queues and access to funding is constrained, while watching her deteriorate.”

“Our son will need 24-hour at least 1:1 support for the rest of his life. We have had to go through an AAT process just for the NDIA to acknowledge that he should have 1:1 support five hours per week. Our family is already significantly burn out and we are unsure how we will continue to provide the level of care that he needs for the long term.”

I SSU E 31 | WI N T ER 2022 11

YOUR SAY

“It really helps take the financial strain off us.”

How stressful are your interactions with the NDIS?

68 100 1 - Not at all stressful 100 - Extremely stressful

“Everything impacts our family. Inability to work full-time, inability to go out without comment or stares, inability to sleep.”

"We will probably run out of funding early this year, as we did last year, which means paying about $600 a week out of pocket to access therapy."

“It puts huge pressure financially. And I have had to quit my job and move to contract work to help care for our son.”

THE FINANCIAL IMPACT HOW WOULD YOU DESCRIBE YOUR FINANCIAL POSITION AS A RESULT OF YOUR CARING ROLE? Good

3.96%

We're doing okay

29.70%

We're treading water and not saving We are struggling

15.35%

29.70%

We live week to week and sometimes need to seek external help just to get by

13.86%

“It helps as my child would not get the support he is currently receiving without it, but the whole process is not easy and plan times are very emotionally taxing!”

12 SO U RCEKI DS .CO M . AU

“It feels like we are at the mercy of a force greater than ourselves and each year when our son’s plan is reviewed, it is fraught with anxiety.”

“Mentally and physically sick from dealing with the NDIS.”

Do you feel like your LAC has a realistic understanding of your child’s needs?

65 100 1 - No understanding 100- Understands completely

WHAT IMPACT DOES DEALING WITH THE NDIS HAVE ON YOUR LIVES?

“It’s a bit soul crushing going over your child’s weaknesses.”

“This impacts our family greatly as my son is not receiving essential services, so we need to fund them.”

“My son cannot speak and has no alternative method of communication. She put down a goal of him using a spoon.”

“Stop the revolving door of staff, better training.”

“Our LAC is rude, they change from time to time and they have no empathy or understanding of the daily pressures.”

“Often dismissive. ‘You won’t get that’ attitude.”

“Our LAC has changed several times in five years. They don’t appear to have had any disability training or have any understanding of autism and the impact. They appear to be pen pushers.”

THE NDIS

HOW TO FIX THE

PRACTICAL HELP

• Give every family support coordination with their first plan. • Include Companion Cards with an NDIS plan – one less thing for us to do. • For families with multiple NDIS plans, offer one planner and coordinate plans to be reviewed at the same time.

We asked Association for Children with a Disability CEO, Karen Dimmock, to make some suggestions. With the help of ACD families, this is her list.

very time I’m at the children’s hospital I think of the families who worked so hard to make it better for children like mine. ACD began as the Action Group for Disabled Children back in 1980. Parents of children with disability came together because they knew the system, and they knew how to make it better.One of their first actions was to improve the children’s hospital. They wrote letters, met with hospital staff and spoke to relevant Ministers and MPs. Slowly the changes they suggested were implemented. Parents were allowed to stay with their children overnight, spaces where families could make a cup of tea were created, hoists were put in toilets. What I take for granted now, is because these families spoke up. Just like those who knew how to make hospital stays better, families with children who are NDIS participants know how to make the NDIS better. As families we spend a HUGE amount of time ringing around finding service providers, setting up service agreements, researching and buying assistive

technology, approving payments, managing the budget and getting reports. Often we are not sure if we are doing it right, and the workload can be overwhelming. So we asked families what would make the NDIS work better for them. The answers were insightful. The suggestions were both practical and big picture. We have shared these with the NDIA and the new Minister for the NDIS. We think this makes a pretty good list of things for them to get started on. This is what would make the NDIS better for children:

BIG PICTURE

Get rid of primary disability. My child is autistic, has low vision and is hard of hearing. Just focusing on his autism does not look at him as a whole person and all his support needs. Provide more core support. There is too much focus on capacity building and not enough on supporting the rights of children to inclusion. Give our children an ordinary childhood, the chance to have fun, dance, play footy and go to

scouts. Don’t just focus on disability-specific groups but provide Support Workers to help them join mainstream activities. Support workers are gold and we need more. They give our children the support to plan and have fun and build independence, they help implement therapy goals and they enable families to continue to care. We are desperate for more core support. The lack of respite is devastating. Clarify parental responsibility. I need more support but they say this is parental responsibility. The subjective use of parental responsibility is shocking. Make the Plan Review process easier. The time it takes to get reports is crazy. If you miss something and don’t get the right evidence, your child’s plan can be cut. The NDIS should teach therapists how to write reports. Don’t expect families to do this. Use what evidence you already have about my child! ACD is the leading advocacy service for children with disability in Victoria and has been speaking up for children with disability and their families for more than 40 years. For more ideas from families, read the report Our Hopes for our Children and the NDIS acd.org.au ----In addition to being the CEO of ACD, Karen Dimmock is the mother of an NDIS participant. I SSU E 31 | WI N T ER 2022 13

THE NDIS Bi

ll Sh

or ten

Nicole Rogerson for Autism Awareness Australia

Restoring TRUST

The state of the NDIS became a key election issue for many individuals and families, with rallies taking place across the country to #DefendourNDIS. What changes can we expect under the Albanese government? Kylie Facer for Cerebral Palsy Alliance

Elly Desmarchelier for Cerebral Palsy Alliance

Heather Renton for Syndromes Without a Name (SWAN)

Tina Furse for Epilepsy Action Australia

Charlotte Bailey for Down Syndrome Australia

14 SO U RCEKI DS .CO M . AU

wo words summarise Labor’s approach – 25-years-old - “so that young adults can restore trust,” Bill Shorten says. receive a diagnosis and support”. “If I’m the minister, you are going • Doubling advocacy funding. to get a lot more empathy and a lot • Tackling waiting lists in hospitals and aged more interest in your perspective.” care for those who have been approved for As we go to print, Mr Shorten is preparing NDIS accommodation, but haven’t received it. to be sworn in as the Minister for the NDIS. • “Triaging” the Administrative Appeals Tribunal In the week before the election, Source Kids backlog and looking to settle claims. hosted a Facebook Live Q+A with Mr Shorten • Ensuring the states “lift their game in terms and a range of panellists representing Autism of education and other services that they’re Awareness Australia, Cerebral Palsy Alliance, meant to provide”. Syndromes Without a Name (SWAN), Epilepsy • R apidly dealing with the long list of requests Action Australia and Down Syndrome Australia. for home modifications and assistive technology. In a broad-ranging discussion, Mr • Dispensing with the “use it or lose it” aspect Shorten outlined what changes a Labor of plans. government would make to the NDIS, • Examining the COVID-readiness response – they include: “because we are not out of the shadow of the • Better access to NDIS: for First Nations peoples. pandemic and I feel that people with disability, • “Getting the plans right” – and ensuring the and the people who love them, were at the back of review processes are transparent. the queue and not at the front, where they belong.” • L onger NDIS plans for those who want them. • O ffering Family Plans for those with multiple “These are all real things. We have a 100-day NDIS participants in the one family. plan that we want to unveil,” Mr Shorten told the • L ifting the staff cap at the NDIA – “we want panellists and Source community watching live. to have more humans in the system and less “I want to return the scheme to what it was. robo-planning”. “The NDIS has become a bureaucratic nightmare • Creating a National Disability Strategy. - people have either received unfair cuts to their • Involving people with disability, and packages, or if you haven’t, you worry the people around them, in co-design. that you will. MISSED THE • Establishing a $15 million fund “So either way, there’s a lot of anxiety BILL SHORTEN for research. in the system. Q+A? • $1million to fund a National “I think it’s insulting the way families Autism Strategy. are told that some matters are ‘parental • $2 million to fund an Autism responsibilities’. You don’t need me to ever Cooperative Research Centre – tell you what your responsibilities are. “without research nothing “I promise to try and eliminate else can really work effectively”. that sort of insulting response.” • L ifting the age cap for people seeking Scan to watch an autism assessment from 13 to By Rebekah Devlin

standing standing standing standing standing

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LET US HELP YOU ACHIEVE LET US HELP YOU ACHIEVE LET US HELP YOU LET US HELP YOU ACHIEVE ACHIEVE YOUR GOALS YOUR GOALS YOUR GOALS YOUR GOALS

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WAITLISTS

Hurry up

AND WAIT Closed books, telehealth appointments, staff turnover - our therapy world is in crisis. And at the centre of it are our kids, who are missing out on the help they so desperately need.

Sorry, we’re not taking Bourke-Taylor PhD, who is a registered on any new clients at the occupational therapist and teaches in moment. We can put you on the occupational therapy program at our waitlist, if you’d like.” Monash University. It’s the same story every phone call you “About 75 per cent of all therapists make – to the physio, the OT, the speechie work in metropolitan areas, leaving or the psych. There are just no therapists rural areas with workforce shortages. with availability. Occupational therapy and speech And if a new clinic does open, word pathology are about 90 per cent femalespreads through local FB groups like dominated, therefore the workforce wildfire and it’s like a bunch of seagulls is more likely to be influenced by on a chip fighting for appointments! maternity leave and part-time workers.” And don’t even bother if you’re in Occupational Therapy Australia regional or rural Australia president, Associate Professor – telehealth with a therapist, Carol McKinstry, says in “We need a often in a different state, is recent years, occupational solid and strong therapy has been the fastest seemingly the best you can workforce. We hope for right now. growing registered health At present, across all need to make it profession in Australia “and disciplines, wait times can more attractive demand for occupational blow out beyond 12 months therapists is only going to to work in this for an initial appointment. boom as the population ages sector.” According to our Source and the need for mental Survey, 35 per cent of you health and chronic disease are currently on a waitlist for a therapist services increases”. and a further 13 per cent said you’ve been “We know the national NDIS workforce unable to access the required therapy. plan has identified the allied health workforce will need to grow by 40 per SO WHAT’S CAUSING cent through to 2024 to meet projected THE PROBLEM? NDIS demand, with occupational therapy “With an ageing population and workforce one of the largest disciplines introduction of NDIS, demand for allied delivering NDIS services," she says. health services has increased dramatically. According to the Australian There are not currently enough Physiotherapy Association, the number of allied health professionals to meet the registered physios in Australia has grown demand,” says Associate Professor Helen by 26 per cent over the past five years – 18 SO U RCEKI DS .CO M . AU

from 31,276 in 2017 to 39,387 in 2021. However paediatrics and disability are specialist areas, so only a tiny portion of physios are actually practising in these key discplines - the number of registered specialist paediatric physiotherapists has grown from 669 in 2017 to 995 in 2021; disability physiotherapists have grown from 180 to 294 in the same period. However, one of the biggest hurdles is staff retention. According to the Australian Physiotherapy Association, the average career length of a physio is just seven years, after spending four years studying in the first place. “We need a solid and strong workforce,” says APA Disability National Group chair, and private practice owner, Julienne Locke. “We need to make it more attractive to work in this sector.”

TIPS to

get seen • Put your name down for as many clinics as possible. • Call regularly and request to be put on the “cancellations list”, tell them you’re willing to take same-day cancellations. • Be prepared to take appointments during school times. • Look outside your area – that may mean travelling further than you’d hoped. • Look online for therapists doing zoom sessions, they might even be in another state. • See if you can hire a therapy student as a support worker, approach local universities. • Look at holiday programs run by therapists or organisations.

Indeed private practices are competing for many private practices. with hospitals, the health sector, “As any reader will know, the NDIS rehabilitation clinics and aged care to is a complex system to work within. secure, and then retain therapists. Many therapists have found the transition On jobs website Seek, to this model challenging. there are currently 2152 It is an evolving space About 75 per job ads Australia-wide for and there are constant cent of all speech pathologists, 7767 changes in documentation therapists work for occupational therapists, requirements, processes, 8144 for psychologist and rules etc,” adds in metropolitan 6119 for physiotherapists. Dr Bourke-Taylor. areas, leaving The APA is conducting President of Speech rural areas training programs in Pathology Australia, with workforce disability and paediatrics, Tim Kittel, agrees, to upskill their current saying the increased cost shortages. physiotherapist workforce on private practices to and help alleviate the strain on waitlists, provide NDIS services, together with but they also say the weight of NDIS financial uncertainty from the Covid-19 compliance and paperwork is onerous, pandemic, has resulted in some speech expensive and unsustainable pathologists leaving the profession or

• Be prepared to have monthly therapy sessions with “homework” to do in between appointments, if you can’t get in as regularly as you would like. • Ask if there are any junior therapists at the clinic – they often have shorter wait times than the senior clinicians.

selling their businesses. And this situation is unfortunately worse for agency-managed participants who require a provider registered with the NDIS Commission-with the cost of auditing, some providers are choosing to drop their registration, particularly in the areas of behaviour supports and early childhood. Speech Pathology Australia had about 9000 members in 2019, today there are over 13,000 members. There are currently 32 accredited universities offering either I SSU E 31 | WI N T ER 2022 19

WAITLISTS

undergraduate or postgraduate speech pathology courses across Australia, with more starting in 2022, including the first one in Tasmania commencing later this year. In January 2022 alone, there were 395 members who notified the Association that they had graduated. To help understand the needs of the workforce, SPA has undertaken a series of surveys with students, practicing speech pathologists, employers and service user organisations. There were over 3000 responses, with the findings currently being examined. However, early indications did show that the current speech pathology workforce has a majority of younger people working in the field. It is similar across all discplines. “Another factor influencing more experienced therapists is that they are very busy with high caseloads and long waiting lists, which makes it hard for them to have time to support less-experienced therapists or take on students who will eventually become the workforce of the future,” explains Dr Bourke-Taylor.

SO, HOW DO WE FIX IT? “All therapy disciplines are currently rallying government to support growth to have a sufficient workforce to meet the needs of NDIS participants,” Dr Bourke-Taylor says. “Strategies such as increasing the number of graduates in the allied health disciplines like occupational therapy, physiotherapy and speech pathology and professional development programs to attract already qualified therapists to consider moving to work with children, are already in place. “Other workforce development strategies such as lowering the cost of training to students to be on par with nurses, or adding therapy professionals to the Priority Migration Skilled Occupations list, are not yet supported by government.” ----By Rebekah Devlin 2 0 SO U RCEKI DS .CO M . AU

Waiting times YOUR SAY “We waited over a year for a speech therapist… By the time we were able to access one, we had lost the funding to do it.”

ISSUE 02

“Waiting lists in regional areas are long and it is getting harder for larger transdisciplinary services to attract therapists with the ongoing costs meaning the hourly rate is much lower than if therapists go out on their own. Individual therapists are not monitored in the same way to ensure high quality services are always provided.”

“Families are often at the grief phase of their journey, and with long waiting lists are left feeling both unsupported and overwhelmed.”

IN ASSOCIATION WITH

For more activities you can do with your child while Busting the myths

you’re on a waitlist, check

Get the most out of your NDIS plan

“Still waiting for some – been three years.”

“I have changed services so many times due to providers changing hours, days of work etc. Paying for more assessments every time we have to change.”

out our latest NDIS e-Mag, in partnership with Leap in!

INS ID E GU I D E C a n th e N D I S h el p m y c h i l d a t s c h ool ?

Kee p t r a c k o f y o u r N DI S sp e n d i n g

2. L a te st i n c lu si v e p r o d u c t s gu i d e

at sourcekids.com.au

DOING OUR BIT With the help of Monash University’s

It is a collaboration that has been

Associate Professor Dr Helen

going for three years, and it is our hope

Bourke-Taylor, herself a registered

that these experiences will be etched

occupational therapist, Source Kids

into the minds of students as they

gives speech, physiotherapy and OT

approach the end of their degrees.

students a chance to get hands-on

Wouldn’t it be great to attract these

experience at our expos.

budding professionals to working in

Approximately 200 local university

the fields of disability and paediatrics?

students volunteer to help families and

So, if you go to an expo and spot a

children visiting the expos, engaging in

volunteer therapy student, take a

games and activities with the kids, as

minute to say hello and chat. In doing

well as chatting to the parents – giving

so, you may be a part of the catalyst

them the opportunity to learn about

for change in improving the NDIS

the real life needs of our families.

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22 SO U RCEKI DS .CO M . AU

I N A S S O C I AT I O N W I T H

DO YOU HAVE A CONSUMABLES BUDGET QUESTION? Ask a plan manager! When it comes to getting the most out of your child’s NDIS Plan, understanding the different budgets and what they cover is really important. The Consumables budget sits under Core supports and funds everyday items related to your child’s disability needs. Experienced Leap in! plan manager, Tabitha, has a wealth of knowledge about Consumables and answers some of your questions so you can use your child’s Consumables budget with confidence Can you briefly explain the Consumables budget?

The Consumables budget funds the purchase of “reasonable and necessary” everyday items required to manage personal disability-related needs. Most of these items will be “off the shelf” and readily available from a store or online. What are the essential things I need to know about the Consumables budget?

There are three fundamental things you need to know about Consumables funding: 1. Your NDIS Consumables budget can be used to purchase items valued up to $1500. 2. The best part about the Consumables budget is that it’s flexible. Once an amount is allocated, you can choose how to spend it - providing it relates to your child’s disability support needs and meets the reasonable and necessary test. 3. Keep track of your expenses. It’s good to have an idea of how you’d like to spread your Consumables budget over the life of your plan, that way you won’t be caught short at the end of your plan. When you have Leap in! plan management, you can use the Leap in! app to track your child’s expenses and ensure their funding lasts throughout the year. Can you only buy disposable items with Consumables funding?

Great question! Consumables may include

single-use disposable items such as absorbent pads and specialised food supplements, as well as many other things that are not singleuse, such as eating aids, modified cups and some personal care items. What types of things can you buy with Consumables funding?

Examples of the things you might be able to purchase with your NDIS Consumables budget include: • Continence products (subject to the age-requirements being met) Tabitha • Catheters knows! • Absorbent products and pads • Disability-related wound and skincare • P umps and syringes for home enteral nutrition purposes supports are still needed because of a • Food preparation products developmental delay or disability. • Modified eating aids • Specialised mattresses and pillows Does Consumables funding cover • Personal care and safety products vitamins and medications? • Telephone or video interpreting No. Everyday vitamins, medicines or • Auslan or signed English training prescription medications are not usually • Vision or hearing-related low-cost funded by the NDIS. This includes supports assistive technology. for health issues not related to a disability including eating disorders, food allergies Can I buy nappies with NDIS and diabetes. Consumables funding? However, if a health professional There is some confusion around whether prescribes nutritional supplements or it’s ok to purchase nappies and other thickener products related to your child’s continence products for children with disability, you may be able to claim them NDIS funding. The NDIS won’t cover dayon their NDIS Consumables budget. to-day living costs that most people have The NDIS may also fund Home Enteral to pay for. As Australian families typically Nutrition (HEN) formula and associated pay for nappies, pull-ups and wipes for equipment if your child gets all, or part, of young children, the answer to this question their nutrition from HEN. depends on age. For children under five: The NDIS Leap in! is Australia’s leading NDIS may only fund nappies, wipes and other plan manager and proudly not-forassociated items if the child has a disability profit. Get support to manage your which means they have higher needs than child’s NDIS plan and tailored advice children of similar age or require urinary from a team experienced in the NDIS catheters. and the Early Childhood Approach. For children aged five and over: As Call 1300 05 78 78 or email crew@ most children are toilet trained by this age, leapin.com.au to learn more about a child may meet the criteria if continence Leap in! plan management.

DO YOU HAVE A QUESTION YOU’D LIKE US TO ANSWER IN THE NEXT EDITION OF SOURCE KIDS? WE’D LOVE TO HEAR FROM YOU. SEND YOUR QUESTION TO MYSTORY@LEAPIN.COM.AU I SSU E 3 I | WI N T ER 2022 23

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MY STORY

Every Voice deserves to be heard! Fiona Lawton was shocked to learn that people with significant intellectual disabilities would not typically vote. So she went to work to ensure her son, Connor, would get to cast his vote.

can safely say that I haven’t always been interested in politics. However, I was jolted out of my comfort zone when I gave birth to a child with complex needs – moving quickly from being a “reluctant advocate” to finding my fierce voice to speak up. Our son, Connor, turned 18 late last year and as the Federal election was called, we contemplated how we would help him to engage in his democratic right. Yet as we supported him to enrol to vote and showed him how to sign an electronic document with a mouse, we became aware of the archaic Commonwealth Electoral Act 1918, which can prevent a person from enrolling to vote or remove a person from the electoral roll if they are deemed to be of “unsound mind" and being "incapable of understanding the nature and significance of enrolment and voting". Now there is one thing that my son definitely knows, and that’s his mind! Yes, he has an intellectual disability, has complex communication needs, and requires support in making decisions about all aspects of his life, but to be deprived of his right to vote for a government, by the government? That didn’t sit right at all. We felt compelled to test the process and the maturity of the system to ensure our son, and people with disabilities like his, had the right to vote.

✔ H e used a mouse to sign the online enrolment form. We watched the news and current affairs shows and discussed the big issues - disability, COVID19 response, healthcare and climate change were all directly relevant to him. ✔ W hen the political advertising arrived, we explained what each candidate was promoting. He even met a local candidate for afternoon tea! ✔ I made an Aided Language Display using some of the Australian Electoral Commission Easy Read resources to describe the government structure and voting process. ✔ W hen we headed out on a rainy day to vote, with his wonderful support worker in tow, I was a bit anxious would the AEC staff support us? Was it going to be too much for him being around all these strangers? I took a deep breath and reflected that we were probably more prepared than many who were already queued up to exercise their rights. ✔ We were fast-tracked through the dedicated entrance for people with disability and spared the long wait.

✔ We went up to the AEC staff member and, using his AAC voice output device, our son stated his name and address, as well as that he loved musicals and had recently been to a Guy Sebastian concert! There were smiles all around. ✔ At the booth, he looked at each candidate's material and selected the number he wanted me to write on the ballot forms. ✔ A ll finished, he walked over and posted his ballot all by himself, shoving those papers into the boxes. Years of practising posting shapes into boxes had finally yielded a reward! And at that moment, I found myself teary and feeling huge pride. There are so many things that are hard for my son. And there are so many things that he will never be able to do, like drive a car. But one thing he absolutely could do was to make choices about who he wanted to have in government to represent him and to help amplify his voice. He knew his own mind. And he voted! By Fiona Lawton I SSU E 31 | WI N T ER 2022 2 5

JEANS FOR GENES

Gene therapy ENTERING A GOLDEN AGE

Patients all around the world are benefitting from research being done right here in Australia, and many new disease treatments could be next.

here is something very heartfelt AAV, which naturally infects humans, about a scientist referring to their usually in the first decade of life. work as “like a buddy system’’ The Gene Therapy Research Unit, where today’s sick kids are helping a joint initiative of Children’s Medical the sick kids of tomorrow. Research Institute and The Children’s It may sound simplistic, but it is Hospital at Westmead in NSW, is led incredibly apt to describe the approach by Professor Ian Alexander. He and Dr that scientists are taking to produce Grant Logan recently received the highlythe next generation of gene therapy acclaimed National Health and Medical delivery systems to help children with Research Council Ideas Grant for their the devastating genetic condition, spinal gene therapy research to develop better muscular atrophy (SMA). AAV delivery systems. The kids In SMA, muscles weaken “The gene therapy field and eventually atrophy. has been under development successfully Children who are born since the early 80s, and treated today perfectly healthy never for many of the following are helping sick decades it promised much, gain the ability to crawl, kids of the walk or sit up, and eventually but did not deliver,” Dr are unable to breathe on Logan says. “However, future. their own. it feels that is all changing, One of the most promising ways to and we have now entered a Golden treat, and potentially cure, SMA is gene Age for the field.’’ therapy. Gene therapies are “genetic Take for instance, the trials to treat medicines’’ where a healthy copy of a gene SMA that have been undertaken in is delivered to diseased cells to replace or Australia since 2018 through Sydney repair a faulty gene. The most efficient Children’s Hospitals Network, which delivery systems we have are those based are showing incredible promise. With on viruses, and in the case of SMA gene just one infusion, SMA is prevented therapy, this is a harmless virus named from progressing – with potentially life-long effects.

SMA RESEARCH TIMELIME

1966 Adeno-associated virus (AAV) is discovered

2 6 SO U RCEKI DS .CO M . AU

1984 AAV is converted into a vector for the first time

While this is very exciting, doctors have hit a stumbling block. Natural exposure to AAV in some patients stimulates antibodies that block the passage of the AAV gene therapy and prevents gene delivery to the target cells. Professor Alexander and Dr Logan are now working to help those patients who have AAV antibodies by producing a new generation of gene therapy tools. They have turned to study the patients who have had successful SMA gene therapy. These patients produce antibodies to AAV in abundance after the therapy has been delivered, which has no effect on the therapy itself – it still works. “It is much easier for us to study the antibodies in these treated healthy kids after they have received the AAV gene therapy. Understanding how the antibodies bind the AAV delivery system will help us to make changes that will avoid the antibody block,” Dr Logan says. “What I love about this research is that we have a buddy system where we are learning from the children who have been successfully treated for SMA, to teach us how to help those children who cannot be treated. The kids successfully treated today are helping sick kids of the future.’’

2006

2014

A false start: AAV gene therapy works in humans (haemophilia patients) but the effects are short-lived

AAV gene therapy works in humans with long-lasting benefits (haemophilia patients)

2017 2010 Mice with SMA treated using AAV gene therapy

First SMA patients successfully treated with AAV gene therapy

It’s only by climbing each hurdle through meticulous research that we can clear the last one and have everyone cross the finish line.

HOPE FOR OTHER DISEASES

2018 NSW Government implements genetic test on heel prick tests for all babies to screen for SMA

2019 First gene therapy trial for those newly diagnosed with SMA, first patient detected within weeks

2022 Australian Government announces it will place AAV gene therapy for SMA on the PBS, making it accessible to all SMA patients

2022 More than 2000 SMA patients treated globally using AAV gene therapy

The good news for families of children with genetic disease is that a discovery in the use of a delivery system (known as a vector) could impact other diseases. This vector is used to deliver gene therapy to patients with blindness, bleeding disorders, diseases of the lung, liver and kidney. Recent success stories involving gene therapy include haemophiliacs who no longer need monthly medical treatment because they have had AAV gene therapy, which in some cases has kept their disease in check for close to 10 years. Children with a genetic illness called Leber’s Congenital Amaurosis have had their progressive vision loss prevented by one injection of AAV gene therapy – which involved the scientists at Children’s Medical Research Institute’s Eye Genetics Research Unit. “We’re learning so much from the treatment of thousands of these patients worldwide, and this will help us inform the next generation of gene therapy. That’s very exciting, because it could impact other diseases as well,” Dr Logan says. “For a long time, the biggest hurdle to the gene therapy field was gene delivery. We have started to overcome this hurdle, but this reveals the next one. One always wants to have a clear run at helping these patients, but this is the nature of experimental medicine. It’s only by climbing each hurdle through meticulous research that we can clear the last one and have everyone cross the finish line.” ----By Monique Cowper

I SSU E 31 | WI N T ER 2022 27

JEANS FOR GENES

does

MAGIC HAPPEN! Kalarny is thriving thanks to cutting edge research.

hen new mum Lykera was told her son would not live to see his first birthday, she struggled to comprehend the news and did

I couldn't even look at Kalarny for a long time. I didn't want to get attached to him. I thought, ‘he’s going to die, what's the , point of this?

not want to get attached to him. But all that changed when she discovered what she calls “the magic of research’’. Five years later, and Kalarny is one of the faces of the 2022 Jeans for Genes campaign, which raises funds for the vital work being done in the labs at Children’s Medical Research Institute. A quiet baby who slept and fed well, Lykera and Aaron thought they had “struck gold’’ with Kalarny. However, at a regular GP checkup, it was discovered he had a heart murmur and further investigation revealed his heart was twice the size it should be. They were bundled into a plane to fly to the nearest major hospital for heart surgery. “After heart surgery, he didn't bounce back,’’ Lykera says. “He still had trouble breathing, and he was still quite floppy, he couldn't hold his head up, he couldn't lift his arm off the ground.’’ Further tests eventually revealed that Kalarny had spinal muscular atrophy a fatal condition where every muscle in the body slowly dies. “It was devastating,’’ Lykera says. “The doctor said it's a degenerative disease and he will not survive past the first year of his life.

Thankfully, they met a specialist who told

the medicine that Kalarny receives, these

them of an overseas drug trial, and Kalarny

patients have one simple injection to cure

was accepted within 24 hours. He now has

them for life.

injections into his spine every three months,

“These children are living a life with no

which is keeping him alive.

wheelchairs, no ventilation support, no

“He's the happiest kid in the world. He's just

feeding support,’’ Lykera says. “It’s life

got a beautiful personality," Lykera says. "He

changing. It blows my mind that if we were

has life by the reins and goes with it. He has

to have another child that had SMA, having

a motorised car that he drives around, he's

gene therapy at birth could mean that this

nearly rolled that thing. But that’s just being

child would not show any signs of SMA.’’

a country kid. There's no holding him back.”

“I think it's important for us to show people

Lykera is on the Mudgee Fundraising

the magic of what medical science can

Committee for CMRI because she knows that

achieve. Look at Kalarny. Magic happens.’’

the Gene Therapy Research Unit is part of

-----

“I couldn't even look at Kalarny for a long

a team running successful gene therapy trials

time. I didn't want to get attached to him.

for kids with SMA. Completely different to

By Monique Cowper

I thought, ‘he’s going to die, what's the point of this?’ But you had to switch that frame of mind. I had to give him the life that he deserved, if we were going to lose him.’’

2 8 SO U RCEKI DS .CO M . AU

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I SSU E 31 | WI N T ER 2022 2 9

Better Together Earlier detection, intensive goal-based therapy periods, and a focus on adult health are key takeaways from a recent conference on cerebral palsy.

RATES OF CP GLOBALLY A new study reported on global rates of CP since 1995. In Australia, and other high income countries from Europe, the rates of CP have been reducing steadily since the mid-2000s, to a new low of 1.6/1000 live births. This is a 25 per cent reduction since the mid-2000s, and one that is attributed to a range of factors including better overall health of pregnant women, improved care through pregnancy - earlier detection of high-risk pregnancies 3 0 SO U RCEKI DS .CO M . AU

and improved care during labour - and improved care in neonatal intensive care units. Health professionals from low and middle income countries reported that their rates are at least double the Australian rate - approximately 3-4/1000 live births, and this is sure to be an underestimate, because infant mortality is still high in these countries. It is a high priority for researchers from across the world to help each other to ensure that all countries can follow the same trajectory.

NEW TOOLS TO DETECT WHO IS AT HIGH RISK Until recently, families were not able to get a diagnosis of CP for their child until, on average, 18 months of age. This meant that children were missing out on receiving CP-specific early intervention to maximise motor development. We now have a tool that is video-based - the General Movements Assessment (GMA) - that can be scored by trained health professionals when the baby is just three months old. Parents can then be told that their child has (or does not have) a high risk of CP. There are other tools that can also now be used, such as an MRI, and if infants are three to 12 months of age when assessed, the Hammersmith Infant Neurological Examination (HINE). International Guidelines on the early detection of cerebral palsy (led by researchers in Sydney) are now available. Implementation problems such as

accessing training and designing new clinics to see infants at the right age, were discussed at the conference. Clinicians left with confidence to keep trialling new strategies to ensure implementation of the guidelines in their area becomes part of normal practice. This will impact families across the world in gaining earlier diagnosis and reduce delays in starting therapies to maximise their child’s abilities.

EARLY INTERVENTION Studies presented at the conference showed that the earlier intervention is commenced, the better. It will always depend on the infant, if they are well or sick, and the family’s access to services, however commencing between three and six months of age may be better for children who have CP. Families see therapists at least fortnightly, with programs embedded into their daily routines. It should be cerebral palsy-specific early intervention, aimed at specific motor goals, with lots of opportunity for practice in the home environment, rather than general intervention. This will optimise children’s motor and cognitive outcomes and enhances parents’ and carers’ well-being.

INTENSIVE THERAPIES V WEEKLY APPOINTMENTS There are now intensive therapy options that are an effective alternative to weekly/ fortnightly therapy. Research presented at the conference confirmed that for schoolaged children, goal-directed therapy is the

PICTURE CREDIT IS COURTESY CEREBRAL PALSY ALLIANCE

global community of more than 1000 attendees, representing 46 countries, gathered to collaborate and share important findings at the 2022 Better Together conference in March. The virtual conference, based in Melbourne, hosted by AusACPDM (Australasian Academy of Cerebral Palsy and Developmental Medicine) and IAACD (International Alliance of Academies of Childhood Disability), brought together speakers from all over the globe and explored a variety of topics, including recent developments in cerebral palsy (CP) research and clinical practice. Importantly, this was also the first time a substantial number of parents and people with lived experience attended to discuss and collaborate with researchers and specialists. Sarah McIntyre and Kirsty Stewart share with us some of the most-promising research to come out of the conference.

CEREBRAL PALSY

Rates of CP are reducing in Australia, but not in all parts of the world.

gold standard approach, as it maximises the child’s motivation. Sessions need to be fun, engaging and at the right challenge level – ensuring challenge is mixed with successes! There are now a number of “modes” that have proven effective. In addition to traditional weekly/fortnightly sessions, families also have the option of a more intensive session format, such as attending “camps” during school holidays, or three sessions a week for six weeks. The important factor is getting the right amount - at least 14 hours of intervention per goal. More info on camps and events can be found at cerebralpalsy.org.au/youthevents

OPTIMISING HEALTH PRIOR TO PLANNED SURGERY Many different medical specialists and surgeons are involved in the care of medically and neurodevelopmentally complex children. New international guidelines have been developed to help prepare these children for surgery

– including optimising nutrition and respiratory health to enhance surgical outcomes, recovery and reduce length of hospital stay. New respiratory guidelines, developed by a team of experts in Western Australia in 2021, also outline the best available evidence about how respiratory disease should be assessed, prevented and managed across the lifespan.

A FOCUS ON ADULT HEALTH Improving the physical and mental health of adults with cerebral palsy and other disabilities is imperative. Poor health can result in reduced quality of life and a shortened lifespan. Comprehensive services are available for children through paediatric networks, but there appears to be a clinical void after transition into adulthood. In Australia and internationally, this is becoming a focus area, to improve the transition process into adult health services and the accessibility of health services throughout adulthood.

CP Achieve, a group of researchers based in Melbourne, is leading many projects focused on adult health - aiming to support people with cerebral palsy aged 10 to 30 years to achieve good health, access excellent health services, and to participate more fully in work, leisure, physical activity, relationships and the community. cp-achieve.org.au Sarah McIntyre is a Senior Research Fellow at Cerebral Palsy Alliance, University of Sydney, Sarah is also the current co-President of AusACPDM Kirsty Stewart is a Senior Occupational Therapist at The Children’s Hospital Westmead, and a Board member of AusACPDM AusACPDM hosts listening and sharing sessions to share knowledge, experiences and learnings. They are held via zoom and are free to everyone. ausacpdm.org.au/events I SSU E 31 | WI N T ER 2022 31

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Make a wish: birthday celebrations with brother, Josh.

ng indiVOICE FHER Being “different” is never easy. But growing up in country NSW, without ever coming into contact with anyone like her, made it all the more difficult for Natalie Hood.

here are still days when Natalie Hood chooses to hide her arms. Sometimes, she just doesn’t have the headspace for the looks and the conversations that inevitably follow. The 22-year-old has bilateral ulnar longitudinal deficiency – a limb difference which means her left arm is permanently fixed in a flexed position and her right arm is bowed in the forearm. She has two fingers on each hand. Natalie is currently in her fourth year studying speech pathology at university and works at Woolworths as a checkout operator. “A lot of people ask me if I am a Thalidomide baby, and I’m like, ‘that drug was banned in the 1960s. I was born in 1999. How old do you think

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I am?’,” she says with a wry laugh. While she understands that people don’t set out to demean her, some can be quite insensitive with comments like “it is so good to see someone like you with a job”. “What do they mean, ‘someone like me?’ I am just trying to make some money. Why does it have to be something special, or so out of the realm of possibility, that I have a job and I’m trying to live my life?” she says. Some days she is able to shrug off the comments, other times, it can really impact her. “Everybody has bad days where they just don’t want to deal with things. I suppose I just don’t feel like being resilient every day,” Natalie says. “And why should we always be expected

Behind the wheel at last!

to be resilient? Shouldn’t society learn how to engage appropriately, to understand how we might feel?” Just the morning of our chat, she had a woman approach her at the gym to say what an inspiration she was. “She meant well, but it’s just really awkward to deal with, I’m just there working out, doing my life stuff… I’m also just not very good at taking a compliment,” she says. Growing up in Deniliquin (about two hours west of Wodonga) in country New South Wales, Natalie didn’t encounter anyone who “looked like me” when she was young. “I grew up and interacted with a lot of people who had disabilities, and we would go to similar things, but there wasn’t anyone like me, having something so rare and unheard of,” she says. There were no mentors, little support for her limb difference and limited access to resources, funding, support groups, sports, specialists or even occupational therapists and physiotherapists.

MY STORY

Making friends in Switzerland.

Exploring the snow in Tasmania.

At Bathurst with Josh, who is an apprentice mechanic.

Her family moved to Wodonga hen she was seven, but even in a bigger regional town, there was still very limited understanding. She had a hard time at school, and was excluded by other girls, particularly between grades five and 10. “Mum’s told me about when I came home from school one day and a boy had said to me ‘you’d be so much prettier if it wasn’t for your arms’. Thankfully I don’t remember that happening,” she recalls. “Kids can be pretty savage.” It’s one of the reasons Natalie has become a mentor with the newlyestablished Aussie Hands Foundation’s Peer Support Network - to help others know that they’re not alone. “I remember when we had our first meeting about the mentoring program, and all of us said it, we’d never seen so many people like us in the one place before. It was then that we all realised just how much this was needed,” she says. “Hopefully we can change that a bit with the peer support program.”

Why should we always be expected to be resilient? Shouldn’t society learn how to engage appropriately, to understand how we might feel? In her role as a mentor, she has the opportunity to talk to young people with limb difference, as well as their families. She encourages them to believe in themselves and always try their best but to also be honest about their feelings, especially on the bad days. “While telling a child with a difference not to hide their arm/hand, and that you love them just the way they are - or telling them to just ignore the looks and the scrutiny, may feel like you are supporting them, it isn’t always the case,” she says. “Acknowledging why they are hiding their arm/hand, how they feel on that day, in that moment, in that scenario, can sometimes be more helpful and supportive.” Natalie says despite many good intentions, most people have no idea of the issues and difficulties encountered by those with limb difference.

“While people respect me for what I can do, they don’t always realise what I have been through just to have an average day,” she says. “I explain to them that I can only drive for about 90 minutes before I fatigue. And cooking a one-hour meal takes me twoand-a-half to three hours.” Even just getting her licence was more difficult than it needed to be - red-tape and unnecessary delays meant it took more than two years for her L-plates to be issued, so now she will be nearly 25 by the time she is on her full licence. She also had trouble accessing the NDIS. It’s another reason why she’s so keen to be part of the mentoring program - to help others navigate these potential roadblocks. “I just want to help people who are going through those kinds of situations like I did: needing special consideration for exams at high school and university, applying for jobs and rejection, getting my licence and NDIS approval, even for my mum getting Centrelink, the endless questions of why you need or deserve assistance, it's a constant thing of advocacy. It can be exhausting,” Natalie admits. “I have definitely had challenges but I have been really lucky with support from family and friends. I also had an amazing experience doing a Rotary exchange for a year in Switzerland that opened up another world to me. “Having this disability and these challenges hasn’t stopped me from trying my best and living a good and pretty typical life.” ----By Lily Toengi-Andrews and Rebekah Devlin

For more information on The Aussie Hands Foundation and its Peer Support Network, head to aussiehands.org

I SSU E 31 | WI N T ER 2022 35

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APPEALS

LESS THAN

APPEALING

Record numbers of NDIS participants are taking their fight to the Administrative Appeals Tribunal. Up against highly-paid lawyers for the NDIA, it can feel like a David and Goliath battle. But 55 per cent of people ARE successful in their claim. Advocate and support coordinator, Sam Paior, gives her tips to help you be one of them.

igh. You tried really hard. You spent thousands of your kiddo’s plan on All. The. Reports. You submitted all the information you thought they needed. But the new plan has come back, and there’s no way it will meet the needs of your loved one.

WHAT NOW? Firstly, you need to be really, truly sure that the plan you’ve got won’t do. Make sure you understand what flexibility you’ve got with the funds, and consider ways to stretch it further – using a therapy assistant instead of just therapists, purchase secondhand assistive technology, check out what local free services might be available, and consider group activites instead of 1:1 therapy services. Group activities with younger children come with all kinds of benefits – like getting to know other parents and caregivers – helping you build a tribe of support, while also giving your kid/s opportunities to play in a safe and supported place.

But if you’ve really looked at alternatives, and you know your child needs more funding, you’ll need to look at appealing the decision.

EXTERNAL MERITS REVIEW - AAT REVIEW You can’t go to AAT for review until you’ve completed an S100 Internal Review. A Change of Circumstances/ Unscheduled, or S48 Review won’t cut it, and would need to be appealed with an

S100 Review before you could apply to the AAT. Confusing much? At the S100 review, a new delegate planner will take all the info you already submitted, plus anything extra you submitted, and look if the first planner used the Reasonable and Necessary (S34) part of the NDIS properly. Of course those reviews all feel pretty subjective and the NDIS is indeed, consistently inconsistent, and it makes us all want to tear our hair out. I hear you.

There are three stages of an NDIS appeal 1. Internal Merits Review: Known also as an NDIA S100 review which means section 100 of the NDIS Act.

2. External Merits Review: Administrative Appeals Tribunal – AAT review.

3. Judicial Review: Decided by the Federal or High Court.

I SSU E 31 | WI N T ER 2022 39

Appeals can be a long and exhausting process.

NEXT STEPS… You’ve got your RORD/S100 answer, and it’s not good. They’ve not approved the needed funding. It’s time to head to the AAT - here’s a checklist of the process, and how you can prepare. The AAT have a great series of videos to explain how everything works at aat. gov.au/resources/information-videos

Get a written copy of your RORD/ S100 Review result and explanation for denial of requested supports. 2. Apply for a Participant Information Request at ndis.gov.au/about-us/ policies/access-information/ participant-information-access Some people prefer a Freedom of Information Request which may or may not give more information. It’s a roll of the dice! 3. Apply to the AAT within 28 days of your RORD review result. https://www.aat.gov.au/applyfor-a-review/national-disabilityinsurance-scheme-ndis/ how-to-apply 4. Seek help from an advocate or legal service – you can go through the funded advocates (there are state-based, and federally funded ones – check both!), legal aid, pro-bono legal services or pay for a lawyer yourself if you have that capacity disabilityadvocacyfinder. dss.gov.au/disability/ndap also google "pro bono legal help". 5. The AAT will assign you a contact officer, who should get in contact within three days (but don’t hold your breath – they’re swamped!). They will explain the process, and help with any access needs. 6. The AAT will ask the NDIS to send them, and you, relevant documents 4 0 SO U RCEKI DS .CO M . AU

and you should check to make sure everything you’ve submitted for plan review etc is included (they’re called T documents and are supposed to be delivered within 28 days). 7. The AAT will then usually schedule a case conference, once the T Documents are received. The Case Conference (as well as Conciliation and Hearings) are these days done nearly all by phone (but you can ask for a video link – make sure the AAT know about any access needs). 8. At this point (or even earlier) you might want to gather and submit any documentation and reports needed. You are also allowed to add extra info at this stage. It’s usually best to do all this before the case conference. 9. Also, before the case conference, you will usually get a document from the NDIS called a “Statement of Issues” where the NDIS will list all the things they see as being under dispute. Sometimes this document will arrive just a day or even hours before the case conference, so be prepared (and get help) to read and understand that statement before the case conference. 10. At the case conference, the AAT person will usually try to help you and the NDIS agree to a result, but if that doesn’t happen, they’ll decide on a Case Plan, which includes timeframes for a Conciliation meeting, and/or a Hearing. That Case Plan will usually ask you and/ or the NDIS to get more information or evidence to everyone within a set timeframe. The NDIS is not very good at sticking with those timeframes, unfortunately (once again, they’re swamped!). 11. After each case conference, you may be entitled to a free Legal Aid

lawyer appointment to go through the “Statement of Issues” and other documents. That lawyer can’t represent you, but can help answer your questions. 12. Once you get to conciliation, the AAT will try again to help you agree, but if that’s not successful the first time, you may end up going back and forth with lots of meetings and requests for new evidence and information. This can be very exhausting and draining, and you might feel like giving up, but this is usually a small sign that the NDIS wants to avoid a Hearing… 13. And if Conciliation doesn’t get you

APPEALS

A few important things to know... Legal Aid may be available to help you at AAT– but unfortunately they have long waiting lists (along with the advocacy organisations) – the good news is that there is no means test for Legal Aid for AAT support for NDIS cases. If you have a Support Coordinator, you can use their help (funded by your plan) to gather evidence and support you in your dealings with AAT, but they can’t be paid from your NDIS plans to provide advocacy or related legal assistance, and sometimes they won’t be allowed to help if there’s a conflict of interest, for example. Just because you got a good result at the AAT, that doesn’t mean any future plans will consider the prior AAT decision - in fact, the current NDIS system doesn’t record or recognise that your “good” plan was due to an AAT decision, and any future plan could well be reduced in line with Reasonable and Necessary. The AAT process can take a long time. While you are going through that process, your current plan remains as current and can be used. If you have a new plan in the

to reach an agreement, the case will go to a Hearing, which feels a bit like court, but not as scary (and no cost to NDIS participants - unless you pay privately for advocacy or legal support). At a Hearing, everyone tells their side of the story, and witnesses can be called on to speak also. 14. If you weren’t able to get Legal Aid before the Hearing, try again now – they’re more likely to prioritise people who are going to a Hearing. 15. After a Hearing, the AAT Members will go away and review all the evidence, the Hearing presentations and the law, and make a decision.

AAT decisions do not set a legal precedent – only a court can do that, but usually, so far, when a case has been taken to the Federal Court, it has agreed with the AAT decisions (but not always!).

WHAT HAPPENS IF YOU “WIN” AT AAT? If you come to agreement at the case conference, or at conciliation (or anytime in between), or an AAT decision means a variation should be made to the NDIS plan, the AAT will write it all up, and everyone signs it and the NDIS is supposed to implement it (which usually means a new NDIS plan) but sometimes they can drag their heels a little on this.

meantime (maybe due to a Change in Circumstances), your AAT case will likely end. Around 90 per cent of cases are finalised within a year, on average taking 21 weeks, most cases are settled before hearing, and in 55 per cent of cases that go to a hearing, the AAT decision results in a change to the NDIS’ internal review decision (ie: in favour of the participant).

Sam Paior is the Founder of The Growing Space, which offers Support Coordination, training and an NDIS resource library subscription. thegrowingspace.com.au I SSU E 31 | WI N T ER 2022 41

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MY STORY

Choose your hard

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Sarah Thomas’ son Lewis has cerebral palsy, epilepsy, ADHD and is PEG-fed as the result of suffering a major stroke when he was three. Lewis and his twin brother, Cohan, are now 14, and life is still chaotic. But this one piece of advice helps keep things in perspective.

recently attended an online medical do. Another hard is getting dinner sorted conference. The conference was good for everyone in my house, including our and the content kept me interested for pets. Then there’s the never-endingthe duration of the event - not an easy laundry-pile hard that seems to be my sole thing to do online - but if you were to ask responsibility. me now what was covered, I could only tell Sometimes my daily hards can be you one thing. A simple, yet profoundly challenges with my son’s medical team. impactful philosophy offered up by one of Sometimes it’s an issue at school. Most the presenters. “Choose your hard”. hards I can manage, as I know they’re I feel like the world – and especially our coming and can generally anticipate what medical world – needs to they’ll require of me. "Sometimes we pause and think about how It’s the hards that come need to take a step out of nowhere that hit powerful this is. Choose your hard. back and say, ‘this is like a brick. Let me explain what this The call from the not the hard that’s school about a child looks like in practice. going to consume Every day, I wake up in sick bay. The dog knowing I have at least five inexplicably limping, me today'." “hards” to tackle. Some needing to go to the vet. days it’s 10 hards, sometimes 15, but The activity we’ve all be excited about it’s never less than five. has been cancelled because someone My first hard is coaxing my sons to get has Covid. ready for school. My second is scheduling Then there are the really hard hards. my day to fit in all the things I need to The school not budging on what I think is

fair and necessary for my disabled child. The surgery date rescheduled for the third time. The support worker calling in sick – or worse still, taking another job. Choose your hard. I can choose to battle my kids into getting ready for school, or I can make their lunches and have their uniforms ready so all they need to do is walk out the door. I can accept that there must be someone sicker than my child who needs more urgent surgery. I can hire another support worker. Hards don’t go away, and as parents to medically complex children, we are faced with many more hards than the average

INSPIRE, EMPOWER, UNITE Mums raising children with special needs

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SOURCE MAMA LIVE

family. We don’t complain about them, we just deal with them. That’s how we roll. But there are only so many hards you can take. When you hit your limit, that’s when you need to choose which hards you are going to tackle, right here and now. Will I fight with my husband because he forgot the milk? Do I need to go out with my friends when I’m exhausted and just want to stay home? Should I explain to my family for the hundredth time that "no, a child won’t always eat when they’re hungry enough"? Sometimes we need to take a step back and say, "this is not the hard that’s going to consume me today. My current hard is a

big one and that’s taking all of my energy to fight. I don’t have the brain power to deal with any other hards". So yes, I still make my teenagers’ lunches and set their uniforms out for them before school, because for me, that’s a hard I don’t need to start my day with. I try to choose the hards that I can manage at the time. I try not to care if that means I do things other parents don’t agree with. I try to remember that those parents don’t have my hards, or the same number of hards that I’m dealing with. And I take comfort in the fact that there are many other medical parents that can, and do, support me when I need it.

Scan to watch

Sarah Thomas runs Wholesome Blends (Australia’s first natural real food shelf stable blended food for tubies - wholesomeblends.com.au) and was one of the guest speakers at our recent Source Mama Live Series event in Brisbane. Watch the raw and heartfelt panel session by scanning the code above.

Join the Source Mama community now! @sourcemama sourcemama.com.au SOURCE MAMA

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Speaking OUT Every child develops differently, but there are certain milestones to keep an eye on. It’s important to recognise potential delays and seek help says speech pathologist, Jane Delaney.

he ‘early years’ of a child’s life (from birth to five years of age) are a crucial time for children’s speech, language and communication development. These skills develop best in language-rich environments, with quality interactions and exposure to the speech and language of others. The development of speech and language skills varies between children, however it is important for those in the child’s environment to support them to build their communication and keep these skills developing as they grow and reach school. As with all development, there are communication milestones a typically developing or neurotypical child may reach at different ages.

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SPEECH AND LANGUAGE MILESTONES

12 months Your child should be able to say some single words, respond to their name, recognise familiar objects and people, start to use sounds, gestures and a few words. 18 months Your child should understand up to 50 words and short phrases, follow simple instructions e.g. ‘stop’, ‘go’, ‘get the ball’, point to familiar objects in books, say up to 20 words, copy noises and phrases. 2 years Your child should be able to follow simple two-part instructions (e.g. give me the car and the ball), understand some simple questions that begin with ‘wh’ e.g. what, where and start to put two words together, like “more please”. By this age children are also using most vowel sounds and a variety of consonants. 3-5 years As children progress, they will put more words together, follow more complex instructions, sort items into groups, develop more speech sounds and tell a simple story. For more details on these please refer to the Speech Pathology Australia Communication Milestones Kit.

As children’s speech and language develops, it is typical for young children to use simplified sentence structure, repeat words or phrases and simplify sounds or sound combinations. Children learn speech sounds progressively and these are categorised into early speech sounds and later developing sounds. For example, early sounds we can expect from children include m, n, t, d, h, w, and lip sound such as p and b. Later developing sounds expected after the age of three include s, sh, ch, j, l, r and th. Young children will have difficulty with saying more complex words such as ‘snake’ with a blend (sn) at the start of the word. In this instance, they are likely to leave out a sound, producing the word as ‘nake’, or ‘sake’. Speech Pathologists will use normative data to support the assessment of a child’s speech and to help make recommendations for parents. Given these early years lay the foundation for later learning, and the building evidence that children who start school behind, often “stay behind”, it is important to monitor children’s communication development. Right

SPEECH THERAPY

Try these speech and language stimulation strategies • Repeating back what your child has said, while correcting words, speech sounds or

now, almost 23 per cent of Australia’s children are not developmentally on-track with their language skills when starting school. (AEDC 2018). Research also indicates that language difficulties in preschool may predispose a child to ongoing reading difficulties throughout childhood and adolescence.

WHEN TO SEEK HELP? If you notice your child is not reaching their communication milestones for their age range, it may indicate a need for extra support. Obvious signs a child may have communication difficulties include when a child is presenting with difficulty in understanding simple words or phrases, is using limited verbal language, is experiencing frustration in communicating, is difficult to understand or stuttering. Speech Pathology Australia would advise that this would be the time to seek assistance.

By the age of three, children should be able to be understood most of the time by both familiar and unfamiliar people.

We often hear of parents or professionals taking a “wait and see” approach. While some children do just need that bit more time and will progress on their own, even by the age of three, children with difficulties will require a lot more support. Plus, given the ongoing issues Australiawide with waitlists, and the potential of a long wait to access speech pathology services, it is strongly recommended that parents place their child’s name on a waitlist as soon as concerns are identified, rather than delaying while they “wait and see”. All children deserve the right support at the right time to ensure strong development of language, cognitive, social and emotional skills, which act as a foundation and predictor of later literacy and learning skills throughout life. Speech Pathology sessions involve child and family-friendly play-based activities parents can replicate at home. They will often focus on supporting parents to use strategies which promote speech and language development. Often parents know their children so well and will pre-empt a child’s needs and wants. This is often also evident when children have older siblings who may communicate for them.

sentence structure. • Using modelling and expanding to support development of new vocabulary, this entails adding a word to what your child has said. • If your child is speaking in one or two-word phrases, you may model and expand your language model to three-word phrases. • Children benefit from opportunities to hear, practice and talk about speech sounds as part of their day. Model sounds when you are talking together. It's okay if your child does not say the sounds after you.

Speech pathologists can also provide support to early childcare educators working with the children at the parents’ request. As speech pathologists, it is amazing to work together with families and children, to see children flourish and have the best start in life, no matter how they communicate. For useful resources, including the speech and language stimulation strategies, go to NSW Government Health - Waiting for Speech Therapy. Jane Delaney is Senior Advisor, Early Childhood and Education for Speech Pathology Australia I SSU E 31 | WI N T ER 2022 51

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Is your child overscheduled? It’s easy to feel like you need to jam pack your child’s schedule with therapies and activities to help “catch them up”. But at what point does it become counter-productive? And when is it important, and indeed vital, to give your child a break? Educational and developmental psychologist, Dr Kimberley O’Brien, shares what to watch out for.

SHOWING SIGNS OF STRESS While older children can usually recognise when they are feeling stressed and tell you directly, younger children don't have such self-awareness. So parents need to be on the lookout for behaviours - for instance, have they recently started picking their skin or nail-biting? “Negative self-talk is another important stress indicator, such as when a child says things like, ‘I’m hopeless’ after participating in an activity. You should also look out for irritability, frustration and forgetfulness, such as forgetting their sports uniform,” Dr Kimberley says.

YOUR CHILD IS HAVING TROUBLE SLEEPING When children are overburdened, they can feel tired or lethargic. Kids need more sleep than adults, so try to ensure they are getting to bed early and make sure they have a meal or snack before activities, to help bolster those energy levels. If your child still seems exhausted despite all these efforts, it might be time to cut back on their activities. Overscheduling can leave some children wired and unable to sleep. “When children have so many things to think about and several plans for the next day, they can struggle to get to sleep,” Dr Kimberley says. “Some high-energy children might seem like they need to do a tonne of activities to burn off that 5 6 SO U RCEKI DS .CO M . AU

energy, but it can have the opposite effect and leave them wired, which can affect their sleep patterns.”

WITHDRAWN FROM PARENTS If you start to notice your relationship with your child is suffering because of their busy schedule, it could be time to make some adjustments. “When you’re constantly rushing from one place to the next, you’re running late, you can’t find parking and your child can’t find their shoes, the parentchild relationship is put under stress,” Dr Kimberley says. “If you find yourself arguing with your child or they’ve become distant and withdrawn from you, it could be a sign they’re overscheduled.”

YOUR CHILD STARTS PUSHING BOUNDARIES A child who does not want to be at a therapy session or soccer practice can engage in some less-than-thrilling behaviours – such as sitting down on the soccer field or refusing to do any of the tasks asked by the therapist! But instead of scolding them, talk to them and try to understand what may be behind their behaviour. Could it be burnout? Or perhaps even sensory overload? Is it indoors with lots of other noises such as whistles or bright lighting? Are there too many instructions being given at once? A switched-on therapist can also help pinpoint the cause.

CRYING BEFORE CERTAIN ACTIVITIES It is not uncommon for kids to have some teary moments before specific activities, and sometimes even the pressure of therapy can be stressful and emotional for kids. But parents need to act if it's happening often. “When kids are really emotional, it's important to not put them in a social context because it can be humiliating and undermine their friendships,” Dr Kimberley says. “Instead, take a breather, go for a walk and teach them how to calm down and regroup. Try to avoid putting pressure on them by saying things like, ‘We paid for the term, so you have to go’. Let them have that session off and tell them that you're going to figure it out together. It’s a great opportunity for both children and parents to practice emotional regulation.”

PERFORMANCE ANXIETY Often overburdened kids begin to question their ability to learn new skills and will start withdrawing from certain activities - especially those in which they are not excelling. Discuss with your child what they do and don’t like about therapy sessions. It’s also a chance to talk about growth mindset – that everyone has to practice and be flexible to learn new skills, even you as a parent. By James Pipe

THERAPY BURNOUT

TIPS TO AVOID THERAPY BURNOUT

Keep sessions short It's not a marathon, but a series of sprints. This applies to everyday tasks as well. Help your child break up their

Talk about what therapy feels like

school work or

Performing certain

them a five-minute

activities and

break to relax, go

staying on-task can

for a walk outside

be difficult for your

or grab a snack.

child. So, explain

Teach them that

how the skills they

while it is important

are learning will help

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them in daily life

should never come

- like making their

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their mental health.

able to climb up the playground ladder, or making awesome craft projects with their new-found

therapy homework into 20 or 30-minute chunks, then give

Set up a routine

to forget the

Predictability and routines can help lower your child’s stress levels. So, try to keep a regular therapy schedule i.e. on the same day once a week or once a fortnight.

needs to learn specific tasks and skills through but be mindful to let them off the

It sounds obvious, but it’s easy

Your child likely

therapy sessions,

Make therapy “homework” fun

scissor skills.

Don’t be afraid to take a break

hook when they need it. If they have a really busy week looming, ask the therapist to skip a session. Perhaps use the appointment as a telehealth parent session instead, giving you a chance to discuss goals and progress, issues

importance of doing fun things with your kids. A child needs to spend at least

arising at home and strategies to assist. If you feel your child is nearing burnout, recognise their

30 minutes a day with their parent to have a strong and healthy relationship. Swap 10 minutes

limits and chat with your therapist about taking a longer break. You’ll find it will re-energise your

of reading or

child and they will

schoolwork with

be more focused

OT exercises like

and enthusiastic

playing cards or a boardgame together. It will not only help

when they resume therapy.

you bond with your child, but make them happier and more relaxed.

Dr Kimberley O’Brien is co-founder of the Quirky Kid Clinic and an expert in child development and mental health. childpsychologist.com.au

I SSU E 31 | WI N T ER 2022 57

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FREE autism workshops to help parents and carers Funded by the Federal government, Early Days is a series of free face-to-face workshops and webinars for families of children aged six years and younger, who are autistic or awaiting diagnosis.

Workshop topics include: My child and autism, Understanding behaviour, Encouraging interaction through play and social learning, Progression to school, Developing my child's independence skills, Helping my child cope with change and an entire workshop on autistic girls. Facilitated by state and territory autism organisations, the workshops provide core information about autism as well as practical advice about caring for a young child on the spectrum. There are also workshops designed for indigenous families and communities, as well for families from culturally and linguistically diverse backgrounds. Additionally, any parent, grandparent or other family

member who has concerns for their child is welcome to attend. The workshops have been running for more than a decade and have helped thousands of families understand their child and provided them with skills and resources to access support. Workshop groups are generally five to 15 people, and all are delivered by a highly skilled and experienced early childhood professional or therapist. However, it is the sharing of stories that creates community, and most participants say listening to other families share their experiences, struggles, concerns and triumphs is one of the most rewarding parts of the workshops. The program runs across Australia throughout the year. More information can be found at earlydays.com. au or you can follow Early Days on facebook.com/ EarlyDaysWorkshopsAU By Rebekah Devlin

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“Ease of navigating NDIS. My choice was Maple Plan due to their software & management of my NDIS spend, including prompt reimbursement to me. I find the NDIS language very confusing & complicated, so having access to a Plan Manager when I need it, simplifies an otherwise complicated process. I wouldn't change from Maple Plan & I would highly recommend them to anyone - wherever you are located!” (Google Review)

“My experience of Maple Plan is outstanding. The skill, time and empathy given to me is beyond the call of duty. My case manager always goes above and beyond, and his interpersonal skills make me feel that I'm not just a number.” (Google Review) Having built a reputation in the NDIS community over the last four years, Maple Plan earned recognition at the Australian Disability Awards as a finalist for the ‘Most Outstanding Plan Manager 2021’. Opening additional offices in Brisbane and Tasmania, Maple Plan is focused on bringing its industry recognised service to the larger community of those on the NDIS. Committed to providing accessibility options for all Australians on the scheme, Maple Plan can help with over 20 spoken languages and access to external translation services. No matter the language of choice, Maple Plan can provide an understanding of the NDIS and offer advice on how to get the most value out of your support. Manage your spending effortlessly via the Maple Plan Gateway, the online portal can provide the participant with direct control over the management of their fund.

Track the NDIS fund as you go with automatic statement delivery and activity reports, which provide an easy-tounderstand breakdown of the spending. Maple Plan offers choice in the way the plan is managed, with automatic or manual approvals for payments. The online system can be tailored to the needs of the individual, making the service as simple or as involved as desired. Maple Plan provides an independent service focusing on providing the best options for participants within NDIS guidelines. By only providing Plan Management services, the advice provided is impartial with the intention of helping participants get the most out of their plan. With no out-of-pocket cost or impact on their funding, Maple Plan provides an accessible and exceptional choice in Plan Management.

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ENTITLEMENTS

WHO'S

Definition of carer A carer is anyone - child or adult - who looks after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support. The care they give is unpaid.

Health c rFacuFni

meht dnuora dlrow eht eviecrep ot When you’re a carer, ytiruces & noitcetorp sed sgnidnuorrus etaidemmi fo weiv you can sometimes elgniS gniK ro elgniS ni el forget to look elbaliava ledom enilro after yourself too. tesdnah esu ot ysaE But thankfully, an elbaliava snoitpo mots

increasing number of services are making sure you get the financial and hands-on practical help you need.

daeh ruoy esoohC

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I SSU E 31 | WI N T ER 2022 61

ENTITLEMENTS

What is available for carers? Accessing information and support is often complicated by differing rules and programs in each state. It can also depend on your Australian residency status. Even if your child was born in Australia, if you are not an Australian citizen, or do not meet the residency criteria, you and your child may not be eligible for benefits provided by the Federal government, including the NDIS and Centrelink. Please check your eligibility for accessing the below.

GOVERNMENT Centrelink have payments you may be eligible for: Carer Payment A means-tested amount of financial assistance which can either be paid weekly or fortnightly. There are different rates of Carer Payment for single and partnered people. Carer Allowance A fortnightly amount of $136.50 (per person you care for), to help towards expenses in your caring role. If you have multiple people you act as a carer for, you get a payment per person. Carer Adjustment Payment A one off payment of up to $10,000 to assist families (in financial duress) following a catastrophic event where a child younger than seven is diagnosed with a severe disability or severe medical condition. You will also need to provide proof of financial hardship including bank statements, tax returns and letter from employer.

WHAT YOU GET Financial assistance.

WHO CAN APPLY Australian citizens and eligible residents.

HOW TO ACCESS You must have a MyGov account to apply online and be ready to have evidence (documents and medical letters) at hand for questions about income, your child’s disability needs and requirements. There is also a medical component to the forms which is to be completed by your treating medical professional to support your application. servicesaustralia.gov.au 62 SO U RCEKI DS .CO M . AU

CARER GATEWAY Carer Gateway is a national support service funded by the Australian Government. It provides free services for anyone caring for a family member or friend who is living with a disability, mental health condition, dementia, chronic health condition, terminal illness, or is frail and aged. Services are designed for carers, by carers, to help build skills and reduce strain, ensuring you are in the best emotional space for your important caring role. Services are free to access and include: Planning and information – to get the support and services to meet your individual needs. Counselling – a private space to talk about the joys and challenges you may face in your caring role. Support groups – a place to share stories, knowledge and experiences with other carers. Coaching – to help set and achieve goals for your future. Practical assistance – access to services to assist in your caring role such as cleaning, gardening and respite care. Emergency respite – 24/7 access to care and support.

Carers are people who look after someone who needs help with their day-to-day living. Source: Carer Gateway.

COMPANION CARD

Companion Card holders receive a second “companion” ticket at no charge at participating venues and on public transport. The companion ticket is also exempt from booking fees. You can use the card at approved venues such as theatres, cinemas and sporting events like the AFL and NRL and even on theme park admission (including annual passes).

WHAT YOU GET One free ticket as the companion of a person with a disability.

HOW TO ACCESS

WHO CAN APPLY

Accessing Carer Gateway services will not affect services delivered through NDIS, carer payments or any state or territory carer services you may be receiving. After an initial assessment and planning session, a Carer Support Worker will talk you through the range of supports available and put a personalised plan in place to match your individual needs. Call 1800 422 737 to register for Carer Gateway or visit carergateway.gov.au for more information.

Anyone who requires attendant care support to access venues and activities in their community (residence and citizenship status not required). The Companion Card is in the name of the person with a disability, so the card may be used by different carers. The cardholder’s companion may be a paid or unpaid assistant or carer, family member, partner or friend. Only businesses who are affiliates of the Companion Card are required to provide a ticket at no charge for your companion.

WELLWAYS CARER GATEWAY In the New South Wales regions of Southwest Sydney (Bankstown through to Wingecarribee), Nepean and Blue Mountains out to Lithgow, these services are delivered by Wellways Australia.

HOW TO ACCESS If you live in the above regions, call 1800 422 737 to register for services.

HOW TO ACCESS State and territory bodies are responsible for issuing Companion Cards. A form must be completed alongside supporting evidence by your health professional/ service provider. dss.gov.au/ourresponsibilities/disability-and-carers/ program-services/for-people-withdisability/national-companion-card

There are more than 2.65 million carers in Australia, which means about 1 in 11 people in Australia are carers. Source: Carer Gateway.

Carers can be any age. Children and young adults (under 25 years of age) are called young carers. There are more than 235,000 young carers in Australia. Source: Carer Gateway.

I SSU E 31 | WI N T ER 2022 63

ENTITLEMENTS

Other services CARERS AUSTRALIA Carers Australia is the national peak body representing Australia’s unpaid carers, advocating on their behalf to influence policies and services at a national level. Each state has its own carers’ organisation, which oversees state-based programs. These are some of the programs run by Carers Queensland. Programs in your state may differ from those listed. • Carer Program is designed to make your life better, providing services to assist you in your caring role, including: • Carer Health and Wellbeing supports you through activities and events focusing on your health and wellbeing, and by connecting you to other carers and your local community. • G uardianship and Advocacy Program assists carers who are experiencing difficulties in their role of caring for an adult who has reduced decision-making capacity. • N ILS Program interest-free loans offered to eligible carers on low incomes. • Community Engagement facilitates a range of activities like tailored information sessions and support for community events to raise awareness of carers and the services available to support; including providing information on how to access the Carer Gateway. • N DIS Local Area Coordination program supports people with disability to live connected and fulfilling lives. The program helps people understand and access the NDIS and connect them to local services. If you are not eligible for the NDIS, Carers Queensland can support you to link in with services, supports and activities happening in your community. 6 4 SO U RCEKI DS .CO M . AU

program offers 1000 bursaries of $3000 annually to assist with education needs and resources

The scheme is recognised

for young carers.

nationally and has established

youngcarersnetwork.com.au

consistent eligibility criteria and to help reduce the barriers for

Hidden Disabilities Lanyard

permit holders when travelling

The Hidden Disability Sunflower

interstate. State and territory

Lanyard is an easily recognisable

governments are responsible for

symbol that indicates to people

the management of the ADPS.

around you that you might need

dss.gov.au

a bit of extra time, support

minimum parking concessions

Carer Business Discount Card

and understanding. Autism Spectrum Australia (Aspect) has partnered with businesses

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Australia to raise awareness

businesses in some states.

about hidden disabilities.

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organisation for further details. qld.gov.au | carercard.vic.gov.au

Caring for Carers

Little Dreamers Supporting young people aged four to 25 who provide care for

Caring for Carers Australia (CCA)

a family member affected by

is an organisation committed to

disability, chronic or mental

acknowledging and honouring all

illness, addiction or frail age.

carers. They hold annual morning

littledreamers.org.au

teas and provide carer retreats. caringforcarersau.org

Young Carer

The Carers Foundation The Carers Foundation Australia provides wellness programs

If you are a young carer aged

to support the emotional,

between 12 and 25, the Young

physical and mental wellbeing

Carers Network can help you

of unpaid carers, via one to

find support whilst continuing

three-day retreats.

your education. The Bursary

thecarersfoundation.org

• Your Caring Way program offers free employment services, subsidised training options, and personalised coaching for unpaid carers in Queensland, Tasmania, and South Australia. They can assist in learning and create a step-by-step plan towards achieving fulfilment in your own life, based on your own needs. • Registered Training Organisation (RTO) offers nationally-accredited training to support you in gaining

a qualification, building your skills, or starting a new career. Training is delivered through a highly flexible and self-paced model, either online or face to face. Available courses include Aged Care, Disability Support, Community Services and Job Readiness. To find your local Carers’ group, head to carersaustralia.com.au By Kelly Wilton

*INFORMATION IS CORRECT AT TIME OF PRINT. PLEASE CHECK WITH YOUR STATE’S CARER SERVICE FOR THE LATEST INFO.

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I SSU E 31 | WI N T ER 2022 6 5

Watches Reads

Books and shows on our radar right now…

SESAME STREET – NEW CHARACTER CHAMPIONING DISABILITY The world’s most-loved puppets have introduced a new character to champion disability representation. Ameera is an eight-year-old Muppet with a spinal cord injury who uses a wheelchair and crutches to get around. Ameera, who

THE REASON I JUMP

loves science, will feature in Sesame Street episodes around

Based on the best-selling book, The Reason I Jump, which was written

the world including the Middle East and North Africa, as well

by Naoki Higashida - a 13-year-old non-verbal autistic boy. Naoki gives

as in videos for children displaced by conflict and crisis

a gripping and touching insight into his, and five other young people’s,

around the world. Ameera is the latest character living with

perspectives of the world – at times intense and overwhelming, but also

disability to appear on the show – currently there is Ricardo,

filled with joyful and rich sensory experiences. It will be released on

Rosita’s father who returns from a military deployment

Disney+ in Australia and New Zealand in August. In the meantime, you

using a wheelchair, and Julia, an autistic four-year-old.

can view the trailer here: thereasonijumpfilm.com

sesamestreet.org

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WATCH, READ & LISTEN

WE’VE GOT THIS – STORIES BY DISABLED PARENTS How do two parents who are blind take their

INCLUDED: THE ALBATROSS NIPPERS STORY

children to the park? How is a mother with dwarfism treated when she walks her child down the street? How do deaf parents know

The Albatross Nippers

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We’ve Got This is a collection of experiences

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by parents living with disabilities, discussing

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the highs and lows of their parenting

tells their march towards

journeys, revealing that often, the greatest

creating history. Nobby’s

obstacles lie in other people's attitudes.

Beach Surf Club coach and local physiotherapist, Nick Marshall, set about creating an inclusive environment within the surf club and the greater Gold Coast community. Read about the challenges and triumphs and why

booktopia.com.au

Listen!

DAD-ABILITY PODCAST – ROB HALE If you know a dad, or are a dad, this is the podcast for you. Its aim is to support and

Nick was recognised

empower dads of kids with disabilities by encouraging them to be vulnerable, open

as the 2020 Australian

up and share stories of success, struggle and everything in between. Rob Hale

of the Year – Local

shares his own experiences with mental health in navigating the challenges of

Hero for Queensland.

being a dad to his autistic son. podcasts.apple.com

angusrobertson.com.au

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I SSU E 31 | WI N T ER 2022 67

KEY C

Children

Youth

Adults

ZOOMER ALL TERRAIN

• Up to 95kg // powered • A ll wheel drive power chair with chassis linked, which means all wheels are in continuous contact with the ground.

F I R E F LY S C O O O T

• T he vehicle can typically climb

obstacles up to 20cm tall.

• 2-6 years // Up to 22kg //powered.

• T he chassis design makes the Zoom

• S cooot’s 4-in-1 design: Scooot,

able to easily combat uneven

Crawl, Ride and Pooosh. Different

surfaces. The motors are located

configurations for differing abilities.

inside the wheel hubs, which

• S cooot can be used outside on flat,

contributes to a low center of gravity

level surfaces such as concrete

and provides continuous four-wheel

or wooden decking.

operation.

• Children who can hold their own

Zoom All Terrain has a reclined seat

head up will get the most benefit

to give a comfortable ride and to

out of Scooot.

minimise spine compression when

Scooot is designed to help children

driving off road. swco.com.au

play, explore and participate in a way that best suits their abilities. specialneedssolutions.com.au activerehab.net.au aidacare.com.au ilcaustralia.org.au mobilityhq.com.au

COME AND TRY!

Most of these chairs will be on display at our expos: sourcekids. com.au/disability-expo

S M I K P H O E N I X T I LT I N S PA C E ( T I S)

C Y A

• Up to 120kg // Up to 180cm // manual. • Adjustable tilt angle +10° to -50° available. • Available in seat widths ranging

Wheelchairs There is a huge range of wheelchairs for children, teens and young adults – encouraging independence and mobility.

E XPLORER MINI

• 12 – 36mths // powered. • T he Explorer Mini encourages movement and early exploration for young children. • Multiple weight bearing surfaces to help promote safe and stable upright postures. • Provides opportunities to improve strength, endurance and postural control. Explorer Mini is designed to aid in the achievement of early childhood milestones by encouraging self-initiated movement for children. permobil.com/en-au

6 8 SO U RCEKI DS .CO M . AU

from 31-41 cm; with a seat depth adjustment in excess of 10cm. • Crash tested, ready to transport and lightweight. Phoenix TIS is ideal for kids and teens who require the use of a wheelchair with a wide tilt range, but not the usual bulk associated with current tilt chairs. dejay.com.au goodlifemedical.com.au regencyparkes.com.au

PRODUCT REVIEW

Y A

T-5 7 000 S E R I E S T E N N I S W H E E L C H A I R • Up to 113kg // manual. • D esign includes precision components that maximise stiffness and improves responsiveness of the casters (front wheels). • Minimises axle play so that a player’s rear wheels are secure and solid for a confident feel. • Sleek curved frame compliments the camber tube and swivel anti-tip. T-5 7000 Series Tennis Wheelchair is faster, lighter, stronger and better for your time on the court. wickedwheelchairs.com.au, invacare.com.au

K I MOBIL IT Y ROGUE XP

• Up to 90kg // manual.

C Y A

• 7.62 of width and depth growth for when kids grow out of most other paediatric manual wheelchairs. • Adjustable 5th wheel is a great alternative to the traditional anti-tipper, still allowing contact with the ground.

M A G I C 3 60

• Up to 160kg // powered. • Compact body responds to off-road challenges and indoor obstacles.

Y A

• Durable, ultra-lightweight wheelchair that meets the active needs of young adults. Rogue XP is a wheelchair that perfectly fits from a child to

SMIK BUZZZ

young adult, who may still

• Up to 50kg // Up to 130cm // manual.

• Highly customisable.

require growth built into the

• Hand-made in Australia to suit each child’s

Magic 360 is the perfect chair for active

wheelchair.

users, from children up to urban young

astris-pme.com.au,

• Easy to transport and lightweight.

professionals.

amemobility.com.au,

• T he smallest growth wheelchair manufactured

activemobility.com.au, gtk.com.au,

etac.com/en-au/australia,

lindsrehab.com.au, magicmobility.com.au

gtk.com.au

• T hree easy change drive wheel options – Urban, Crossover and Off-road.

C Y

needs with a wide range of custom options.

by Dejay. SMIK Buzzz, although a compact wheelchair, will withstand the strength of a child’s investigation and adventurous spirit.

KI MOBILITY L I T T L E WAV E A R C

SUPER LIGHT!

dejay.com.au, goodlifemedical.com.au, regencyparkes.com.au

• Up to 75kg //manual. • L ightest paediatric folding tilt-inspace wheelchair available. • Available with several wheel lock and brake options, including drum brakes to help slow down on slopes. • Up to 45° tilt-in-space with the Arc shaped tilt system. Ki Mobility Little Wave Arc is a tiltin-space wheelchair, where the Arc shaped tilt roller system helps the wheelchair stay stable, even when tilted right back. astris-pme.com.au, etac.com/enau/australia, gtk.com.au

I SSU E 31 | WI N T ER 2022 6 9

KEY C

Children

Youth

C Y A

Adults

OTTOBOCK AVA N T G A R D • Up to 140kg // manual. • Folding wheelchair for active users. • Optimum support for your active day-to-day life. • B enefits include new push handles, elevating leg support, integrated pockets, small folding size and anti-tipper. The Ottobock Avantgarde 4 has been optimised without giving up proven advantages. astris-pme.com.au, dejay.com.au, thinkmobility.com.au ottobock.com/en-au

C O GY • Up to 160kg // manual.

• Cogy is the wheelchair

for your legs and does

not require arms to push. • Helps people with rehabilitation and mobility, rather than providing a C Y A

S P E X W H E E L C H A I R, SE AT ING & POSITIONING • Highly configurable modular

degree of comfort. • C an be pushed and steered from the rear, or you can pedal and steer yourself. Cogy is the world’s first wheelchair that moves by pedalling and comes in 3 sizes. cogycogy.com/en, summerlandscooters.com.au, timmermansmethod.com.au

seating to accommodate different postural needs. • Easy to use and install on virtually any wheelchair base, with a dedicated paediatric sizing range. • Bumblebee Yellow to Calypso Pink; a choice of 9 different colours to brighten up your child’s Spex products. Spex Wheelchair, Seating and Positioning range will take care of your child’s wheelchair

C Y

ZIPPIE ZONE • Up to 75kg // manual. • T he lightest Zippie, designed for active kids and teens. • O ffers numerous growth options and provides the greatest wheel access for independent mobility. • D esigned for the unique needs of kids with bright options including Zebra and Glow in the Dark frame colours.

seating needs with clinical and

The Zippie® Zone™ is an ultra-lightweight and

ergonomic support.

rigid wheelchair that is perfect for kids and

astris-pme.com.au, activerehab.

teens on the go.

net.au, activemobility.com.au,

astris-pme.com.au, aidacare.com.au,

gtk.com.au, medifab.com.au

dejay.com.au, sunrisemedical.com.au

70 SO U RCEKI DS .CO M . AU

PRODUCT REVIEW

TILITE TWIST

• Up to 74.8kg //

manual. • D esigned from the ground up for kids, the TWIST encourages exploration and independence. • T here are no parts or growth kits to buy, instead it grows with you. • Includes the TWIST Centre-Mounted Push Handle option height-adjustable and easily removable, the handle is there when you want it.

The Twist has a Tru-Fit system that allows you to fine tune the fit of your wheelchair because you are not limited to a series of pre-set holes. C

dejay.com.au, gtk.com.au, permobil.com.au,

MOTION COMPOSITES HELIO KIDS

wickedwheelchairs.com.au

Y A

• Up to 79kg // manual.

• Outstanding performance and unrivalled lightness.

T H E B A R RY

• Frame allows you to achieve a super-low 33.5cm A

• 140kg + // manual. • Mogo Barry is a custom-built bariatric chair. • Features heavy duty tubing,

(approximate) seat-to-floor height. • Made from the lightest and most rigid material available, it is renowned for its vibration dampening properties. Helio Kids wheelchair is manufactured using a carbon fibre technology that provides strength and

industrial wheels and triple

durability, yet is lightweight.

layer upholstery.

astris-pme.com.au, activemobility.com.au,

• Suspension can be added

dejay.com.au, gtk.com.au

to reduce the frame stress involved in day-to-day activities. The Barry is custom-made and ready to roll, giving you stability and support. mogowheelchairs.com.au

R G K P R E DA T O R – RU G B Y W H E E L C H A I R

Y A

• Up to 125kg // manual. • D esigned with 5 times wheelchair rugby Paralympian Alan Ash.

• Responsive, lightweight but incredibly hardwearing, the chair will have the perfect fit that only made to measure can provide. • Heat-treated frame, a Y frame chassis for excellent impact distribution and many frame options to tailor your chair to whichever version and position of rugby that you play. The Predator is a gnarly beast, perfectly adapted for the high-impact game play and pure aggression on court that wheelchair rugby commands. sunrisemedical.com.au

HIPPOCAMPE BEACH WHEELCHAIR • Up to 130kg // manual.

Y A

• Compact all-terrain beach wheelchair. • Fold-down back seat, removable push bar and detachable wheels. • Easy to steer. The Hippocampe all-terrain beach chair is globally recognised and has received numerous awards for design for making the beach and water-related activities accessible for everyone. astris-pme.com.au, at4kids.com.au, beachwheelsaustralia.com, motum.com.au

I SSU E 31 | WI N T ER 2022 71

KEY C

Children

Youth

Adults

FREEDOM NXT

C Y

• Up to 105kg // powered. • W idth and depthadjustable frame. • Adjustable back angle from 80° to 120°. • Compact, lightweight and durable folding frame. A hybrid by design, NXT™ is a strong, durable, lightweight tilt-in-space folding wheelchair that can be configured to suit a variety of seat and floor heights. amemobility.com.au, astris-pme.com.au, C Y

aidacare.com.au

HOGGI

gtk.com.au, invacare.com.au

• Up to 90kg // manual. • Hand-made in Germany to suit each child’s needs. • Ready to transport and lightweight to take anywhere. • W ide range of colours and custom options to meet all your requirements. Hoggi CESA is a sporty wheelchair for kids and teens, with a huge rigidity despite its low weight. astris-pme.com.au, dejay.com.au

LECKEY BEME

• Up to 70kg (3 sizes) //

NEW LAUNCH

manual and powered. • Manoeuvrable hi-low mobility base that enhances participation and inclusion. • Modular seating to fit the exact needs of the child as they change and develop. • Grows with child contoured cushion provides support, skin protection and comfort. Diverse range of accessories and options to provide the required postural support including optional air-controlled dynamic backrest. sunrisemedical.com.au

72 SO U RCEKI DS .CO M . AU

C Y

ROVI STANDING POWERCHAIR • Powered. • Up to 50° tilt, 163° recline, and power seat elevation. • Unique chassis design and narrow footprint for smaller users. • S tand up function, with a huge range of accessories and options to suit your exact needs. Rovi standing powerchair is perfect for the mobility needs of children with its small design and ARC suspension, offering optimum performance for active kids. activerehab.net.au, thinkmobility.com.au

NSW / ACT

STABILO MULTISEAT

Car seat, Orthopaedic seat and Swing. ALL IN ONE.

02 9905 5333 I info@swco.com.au I swco.com.au I at4kids.com.au

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INSPIRE, EMPOWER, UNITE Mums raising children with special needs We invite you to join the most exclusive, inclusive club - Source Mama. Unapologetically candid, uncut + heartbreakingly real, whilst uniting, elevating and fiercely empowering. Join the greatest pride of lionesses in our community that supports mums raising children with special needs.

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SOURCE MAMA I SSU E 31 | WI N T ER 2022 73

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I SSU E 31 | WI N T ER 2022 77

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Expressive art therapy operates individual, group art therapy sessions, and counselling for all ages and abilities that is designed in a way to improve participants mental health and wellbeing.

• Qualified counsellor. • Tailored to the individual NDIS goals and interests. • Group activities range from art, cooking to gardening. • Express their feelings build social skills, confidence, increase self-awareness and develop positive coping skills.

We believe in the unthinkable. We live the unbelievable. We know the incredible. @sourcekids @sourcekidsmagazine sourcekids.com.au More info: expressiveartherapy@yahoo.com expressivearttherapy.com.au 04916 83113

I SSU E 31 | WI N T ER 2022 79