By Chris
This article is part of My Plan Manager's guest blogger series.
A note from My Plan Manager: The tips and information in this blog are taken from personal experience and may not mirror your own National Disability Insurance Scheme (NDIS) journey. If you haven’t yet read ‘Need help with the National Disability Insurance Scheme (NDIS)? Here’s where to get it (starting at pre-access)’, turn around and start there!
Once you’ve read that, come back to this article where Chris shares his NDIS tips from personal experience.
The process of becoming a participant in the NDIS can begin with a verbal access request, where a person with disability, their family member or guardian calls the National Disability Insurance Agency (NDIA) and asks to apply. Another option to apply for the NDIS is to submit an access request form. Both of these require supporting evidence from a treating professional.
Note: We recognise that everyone’s experience with the NDIS is different. However, you can contact a Local Area Coordinator (LAC) free-of-charge to help you apply as the first step when you are thinking about requesting access to the NDIS.
Once done, contact a disability advocacy organisation for support. Most advocacy organisations will help to unpack the terminology and jargon that is often used in the disability sector and having someone by your side who is familiar with those terms and phases really helps. Most advocacy organisations will do this for free.
If your application to access the NDIS is approved, the first thing to do is to go to a pre-planning meeting that’s usually held with a Local Area Coordinator – or LAC. LACs help NDIS participants to develop, review and implement their plans. During the 90-minute catch-up, the LAC will gather information and work with you to determine what to put in your plan.
You can ask your current providers to help you prepare for this meeting, and they can even join your pre-planning call with your LAC.
The process is challenging, but with patience and perseverance, you can make it through the experience.
If your application to access the NDIS is turned down, don’t panic. This decision can be challenged through a number of review pathways that you can find at the end of this article.
Once your eligibility is established, the NDIA will contact you to set up a planning meeting. During this meeting they will ask a series of questions about your experiences in regard to your disabilities, what disabilities you are diagnosed with and what services you think you will need. There may come a point in this meeting where they ask you to justify your needs, so it is a good idea to have someone from the organisation that helped you with the pre-planning meeting there with you for support.
It is always good to have someone else with you to take notes when you speak to the NDIA. If you’re not able to have a third person with you then politely tell the NDIA that you can’t talk at the moment and arrange a time when you can have someone else take part in the conversation. Do not take no for an answer to this request as they cannot force you to talk to them.
After the meeting, the NDIA will present you with your NDIS plan. If you’re happy with it, that’s great. If not, you have 90 days to request a review. Often people aren’t aware of the 90-day limit, so keep it in mind, because you have a time limit to challenge the NDIA’s decision. If you can’t resolve the matter by way of a review, this is where legal aid and/or the Administrative Appeals Tribunal come in. These are both free services and both have specialist teams that deal with matters relating to the NDIA.
Both options have resulted in positive outcomes for me, so I leave the choice to you. Just remember, these people are on your side, so always be polite with them.
You can find more information about getting a decision from the NDIA reviewed here: The lifecycle of an NDIS plan
This month on Kinora, our online community for people with disability, their supporters and service providers, we’re exploring eligibility and access to the NDIS. If you have questions about applying for the NDIS or this pre-planning phase, log on to Kinora to connect with a coach who can point you in the right direction.
Hi I’m Chris. I’m a 44 year old Autistic person. Originally from California, I ran away to Australia as soon as I could. Raised in the country, life wasn't easy with an invisible neurological difference, especially when that difference wasn't even widely known about. On top of that I didn’t even get a diagnosis until I was 39 years old.
By Marie-Louise Carroll
This article is part of My Plan Manager's guest blogger series.
It was hard knowing which direction to turn to when my son Jordan – who lives with a disability - became an adult.
His vision issues weren’t the problem, but his short-term memory loss was a different story. I saw a program called Rewire that was run at the local campus of TAFE SA, and it seemed perfect for Jord. It was aimed at young adults with different kinds of brain disorders, and it went through varied topics to help young people make decisions about their pathways into adult life.
While Jord was at Rewire, TAFE SA facilitators came to give a presentation about what they offered, and after reading the information they provided, Jord decided that it might be for him. Enrolling in TAFE SA involved making an appointment with the inclusion officer, filling in forms about Jord’s disabilities and medical issues and, of course, Jord knowing what course he wanted to do.
There were some problems at the start. Jord’s original course was cancelled and the only other course he wanted to do was a diploma, which was a huge challenge. We then had to see the facilitators running the course as they wanted to make sure Jord would be able to handle the content.
The thing I want to say is that, although the course is meant to be completed across a 12-month period, Jord doesn’t go to TAFE SA every day. Instead, he goes just once a week - and then he has another day set aside for revising and doing his assignments. Jord has a support worker with him both days and, in the early days, he had access to a TAFE SA support worker too.
A tip from me - never rule out an opportunity by looking at the usual length of time for a course, because these things can be worked around. TAFE SA has been brilliant at accommodating Jord’s needs - the facilitators of his course have been extremely supportive, and for Jord, the course will take about four years to complete.
"Never rule out an opportunity by looking at the usual length of time for a course, because these things can be worked around."
- Marie-Louise Carroll
Being at TAFE SA has really helped Jord’s concentration and, to a degree, his social skills too - but it’s really important to get the right support worker and it can be hard to get the right fit sometimes. The support worker Jord works with now is older and patient, and Jord is thriving, concentrating, and doing all of his work himself, with some occasional help.
There are lots of things to consider if the person you care for decides to try TAFE. A big one for us was that diplomas cost a lot of money - more than certifications! We learnt that one the hard way, but we got there in the end.
I have to say, I still find it more difficult for me now that Jord is an adult. The demands are different to when he was a child. For example, he has tried to get work by himself, but it’s just so hard for him. He had a traineeship once, but not one of the four interviews he had turned into a job, because the potential employers were concerned about the health and safety issues that might arise because of Jord’s vision. It was frustrating, but there’s not much you can do about it except to look at other options - which is what we did.
"Being at TAFE SA has really helped Jord's concentration and, to a degree, his social skills too - but it's really important to get the right support worker."
- Marie-Louise Carrolll
It’s also taken Jord a few years to know what he wants to do once TAFE is finished, but he wants to put the skills he has learnt into his own business with his photography, so there might be even more TAFE needed for that.
Trying to help your children find something that gives them satisfaction and pride in themselves isn’t always easy to do, but when you can, they feel like they are achieving, and it’s pure happiness to see that.
Marie-Louise Carroll is a mother, carer, nurse, advocate and support worker to her beautiful son Jordan, who is 24 years old. When Jordan was 11, he had a massive bleed in his brain which caused a stroke. Marie learnt to be an occupational therapist and support worker to him and then (to pay for his skiing goals) she became a support worker at Vision Australia. In ‘past lives’ a singer, dancer, office worker, lollipop lady, dance teacher, Marie is currently a disability rights advocate with regular public speaking engagements.
Did you know My Plan Manager is carbon neutral certified by Climate Active? Our desire to become carbon neutral originated from our commitment to creating a healthy, sustainable and inclusive Australia.
We are steadily reducing carbon emissions through sustainable policies, purchasing practices, renewable energy, and carbon offsetting to support our environment and the communities in which we provide services.
As Australia's largest plan manager, we believe it's vitally important that we lead the way - advocating and driving meaningful climate action within the disability community.
In addition to reducing our carbon footprint within My Plan Manager, we have also invested in the Mount Sandy Conservation and Taichung Wind Project. The project is a South Australian carbon offset program that directly supports the indigenous community and provides a positive environmental impact through environmental regeneration, job creation and economic wellbeing.
Thank you to all those who have supported, and continue to support, My Plan Manager in reducing our carbon footprint to help build a healthy, sustainable and inclusive community!
If you or someone you care for has ever felt in deficit or 'less than' because of disability, you don't want to miss Tim and Judy Sharp’s compelling story.
My Plan Manager recently had the pleasure of hosting a virtual event with Tim and his mum Judy for International Day of People with Disability, and we wanted to share their incredible tale of ability and resilience with others.
Tim started drawing Laser Beak Man, the superhero he always wanted in his life, when he was 11 years old. Today, he’s an internationally acclaimed artist whose work has been featured globally - including on Broadway and through TEDx – and showcased in stores in partnership with Australian brands, and in company boardrooms. He has travelled the world with his mum at his side to tell his story and bring his art to the attention of others, all while sharing one clear message: ‘believe in your dreams and walk the road to happiness’.
But, when Tim was born in 1988, this was far from their reality.
“At 20 days old, I was at the doctor asking ‘What’s wrong with my baby?’, Judy said. “I was back there nearly every week asking this question, without any answers. Instead, the suggestion was there was something wrong with me – that I wasn’t coping, that I was depressed, that I couldn’t do it.”
"At 20 days old, I was at the doctor asking 'What's wrong with my baby?' I was back there nearly every week asking this question, without any answers. Instead, the suggestion was there was something wrong with me - that I wasn't coping, that I was depressed, that I couldn't do it."
- Judy Sharp
Tim couldn’t sleep, was awake for 36 hours at a time, and had trouble eating. Everyday sounds like a clattering cutlery draw would terrify him. He was constantly distressed, and strangers would randomly ask Judy what was wrong with her child.
But Judy’s biggest concern was that Tim wasn’t developing speech. If he could only tell her what was wrong, she could help him. But the doctors kept telling her to wait until Tim was three. So, she did.
A day after Tim’s third birthday, what Judy describes as the worst day of her life, Tim was diagnosed with autism. According to a medical specialist at the time, Tim’s barriers to life would be so severe that Judy should ‘put him away and forget about him’. The doctor said Tim would never speak, never go to school, have zero quality of life - and, worst of all, he would never love Judy, and would only ever use her as a tool for getting what he wanted.
The advice shattered Judy.
“By the time I got to the car, I was completely hysterical,” she said. “But as I was putting Tim in his car seat, he was patting me on the back and wiping my tears. He was comforting me.”
"By the time I got to the car, I was completely hysterical. But as I was putting Tim in his car seat, he was patting me on the back and wiping my tears. He was comforting me."
- Judy Sharp
She could have listened to the specialist and quit parenting her son - but she didn’t. Instead, she started Tim on a course of intensive therapy. Finding learning institutions that would accept him in those days wasn’t easy, but she did it.
When Tim was four years old, it suddenly struck Judy: Tim was too young to read, but he could see. So, she sat down at the table and started drawing for Tim, despite possessing no artistic ability.
“Normally it would take all day to get his attention for a few short minutes,” said Judy. “But when I started drawing, he was fascinated.”
Seeing Tim’s reaction on that first day of drawing, Judy started sketching a schedule of what their day would look like, with the images clearly communicating their plans to Tim. When she put the pencil down, Tim pushed her hand back towards it - for the first time communicating to Judy what he wanted.
Less than 12 months later, Tim started drawing, and despite the doctor’s insensitive and incorrect advice, he did learn to speak.
At 11 years of age, Tim created Laser Beak Man, and he hasn't stopped drawing him since.
When he was 16, Tim was selected to appear at the world’s largest arts festival for people with disability in Washington DC. However, getting Tim to the United States wasn’t easy for Judy, a single parent of two young children. The bank declined the loan request Judy submitted to finance the trip, however, as luck would have it, a mortgage broker selling loans knocked on her door, and after hearing her touching story, he pulled in a favour to get Judy financed – and she and Tim were on their way!
After Washington DC, Tim’s artwork quickly captivated the world, and his career took off. He exhibited at the Sydney Opera House and Australia’s Museum of Contemporary Art, and he was named as a Young Australian of the Year finalist in recognition of his work to encourage autism awareness. A short time later, Tim was the first person with autism to have his art converted into television animation, with Laser Beak Man airing on ABC TV, and the Cartoon Network in Australia, New Zealand, and Asia.
From there, Tim’s successes kept stacking up. He was invited to appear as a speaker at TEDx, the Broadway-developed theatre production of Laser Beak Man opened, and a short film about his story was shown at the Metropolitan Museum of Art in New York. He's spoken on autism to a wide variety of audiences, seen the Laser Beak Man show tour Australian theatres, delivered a best-selling biography, and even partnered with a major Australian sock manufacturer to launch a line of Laser Beak Man-branded socks and sleepwear at David Jones. You can grab a pair that's based on Tim's 'Raindeer' artwork (pictured below) here.
“I was born to do my art, it makes me happy and it's part of who I am," said Tim. “I always try hard to be a good person and be the best I can be. A lot of incredible things have happened in my life and every day is a good day for me.”
"I was born to do my art, it makes me happy and it's part of who I am. I always try hard to be a good person and be the best I can be. A lot of incredible things have happened in my life and every day is a good day for me."
- Tim Sharp
Though every achievement, Tim’s mum Judy has been at her son’s side as his biggest fan and greatest supporter, showing that love, acceptance, and space to grow can lift the lid off incredible potential.
“This is how we’ve done autism from the very beginning: hand-in-hand, side-by-side, step-by-step, surrounded by love,” said Judy. “Tim teaches me the power of love every single day of his life, and what it can do.”
“All the cliches are true: love is the greatest, love conquers all – love who you are, love what you do and love this one short, precious life you have, because there is no one else like you.”
You can follow Tim and Judy’s journey at @laserbeakman on Instagram or at laserbeakman.com.
My Plan Manager interviewed Louise about how she’s used her National Disability Insurance Scheme (NDIS) funding to develop her skills, launch a career, and achieve her plan goals, and the tips and tricks that every participant can use to make the scheme work better for them.
Louise: I joined the NDIS in 2018 after having a seven-year mental illness and disability from an acquired brain injury. A goal in my plan was to develop myself as a professional artist, and the NDIS enabled me to access an art mentor through Arts Access Victoria.
Getting a qualified mentor that knew the art world helped me to focus on developing my practice and build a career quite quickly. Through that, my art became more recognised, which led me to secure an amazing studio space in a purpose-built art precinct called Collingwood Yards. It’s great to have a dedicated studio space amongst a supportive community in Melbourne.
Louise: Art is my voice and my mindfulness and thus a key to attempting to be healthy. My NDIS plan is integral to providing a path to strive for wellness and be a more functional person - a person who now feels more in control of their life. My earlier series of work expressed how my disability was impacting my life. I was stuck in this unwell frame of mind of isolation through illness, and was able to grow through the support of an art mentor, connections and healing through the art of making.
Louise: My art mentor was funded under the capacity building budget in my NDIS plan. She’s building my capacity to live independently and to actively contribute to the community in a meaningful way though my art, which my key NDIS goal.
Louise: I have an awesome GP that recognises the importance of a multidisciplinary team. My GP knows me extremely well and belongs to a community health centre where there’s a team of health professionals under one roof. They have counselling, podiatry, a dietician, and dental services, so it’s like a one-stop shop that I regularly use. You have to have a sense of community and diversity to work for a multidisciplinary practice, so the team actually has similar values, and because of that, they have a real commitment to supporting people in their wellness journey.
To have a one-stop shop is really helpful because the team can tap into my information, and I don’t have to tell my story again and again. It’s succinct, coordinated, thorough and highly professional. If you don’t have a GP that knows you well, and can pick up on subtleties and changes and help you with your NDIS application, you can’t get very far.
The other thing that’s been important is Art Access Victoria, which supports and develops artists with disability. They are and continue to be instrumental in supporting me with my arts practice. Without them I wouldn’t have discovered the NDIS - it’s transformed me from stuck and mentally unwell, to the more functional person I am today.
"I have an awesome GP that recognises the importance of a multidisciplinary team. My GP knows me extremely well and belongs to a community health centre where there's a team of professionals under one roof. To have a one-stop shop is really helpful because the team can tap into my information, and I don't have to tell my story again and again."
- Louise
Louise: My community health centre where I see my GP, has an NDIS team Including my support coordinator. My support coordinator knows me and my NDIS plan and puts systems in place so I can actively work towards my NDIS goals.
Louise: It's important to have a support coordinator who’s competent, has your back and will make your NDIS dollar work the best for you, otherwise your plan can fall down really easily. The NDIS is a complex, confusing area, so if someone is giving you incorrect information or your gut instinct says ‘this isn’t right’, then you really should listen to that. My previous support coordinator was giving me incorrect information and that was really distressing. If something’s not working, then you need to make it known. When you make it known, you’ll make it better.
"It's important to have a support coordinator who's competent, has your back and will make your NDIS dollar work best for you, otherwise your (NDIS) plan can fall down really easily."
- Louise
Louise: I made a complaint to the NDIS coordinator at my community health centre and that person gave me another support coordinator who understands the system, what money is available, and is willing to advocate for me.
Louise: I know that I’m in good hands and have outsourced my plan management to experts. If there’s an area that’s underfunded or overfunded, I can easily ring My Plan Manager and they can walk me through that. I don’t have to worry about paying my bills and My Plan Manager makes payment to my NDIS team really quick and streamlined. I know that my team will be paid correctly and efficiently, on time and in a consistent manner.
"My Plan Manager makes payment to my NDIS team really quick and streamlined. I know my team will be paid correctly and efficiently, on time and in a consistent manner."
- Louise
Louise: I work on my art practice eight hours a day, six days a week and each piece takes approximately four weeks to make – it’s dirty, dusty and time-intensive, but I love it! I use a 1500-year-old art form from the Roman Byzantine era called Ravenna, where each piece of stone is hand cut and tweezered into place.
I've recently finished making a documentary about my arts practice that’s going to be released in November. It talks about my journey to wellness and the part that the NDIS has played in that - because without the scheme I wouldn’t be the person I am today.
Louise: I plan to continue in my creative arts practice. I’m so grateful that the NDIS has enabled me to be able to do that, to function at a higher level and contribute to the community in a positive way. This can be hard to achieve when you have a disability, so I’m incredibly grateful to the NDIS. My life has flourished and has so much more meaning with the NDIS being central in my life.
I’m currently looking for funding for a second documentary that's in the pipeline about the NDIS and art mentorship, which has been really significant in my wellness journey. You can find out more about me on my website www.louisemarson.com. I’m very grateful for the NIDS and My Plan Manager for making it easier to get to where I am today.
You can find out more about Louise’s exhibition at the Dax Centre (running until December) called Breathe at www.daxcentre.org/louisemarsonbreathe.
At My Plan Manager we put clients at the heart of everything we do. That’s why we are proud to announce we have been recognised as a Top 10 AFR BOSS Most Innovative Company in 2021 in the Banking, Superannuation & Financial Services Category for launching Kinora, a truly unique and sector-leading service to the disability community.
Kinora is where people with disability and their support network can connect with each other. You can ask questions or share thoughts with the Kinora community. You can also respond to questions and share your knowledge and experience. Built on inclusiveness, kindness and support, we make sure it’s a safe space, free from judgement or negative behaviour.
To be recognised as a leading Innovative Company, judges look at how valuable the problem is that the innovation solves, the quality and uniqueness of the solution, and the level of impact that the innovation has had. Judges also assess internal elements such as innovation culture, strategy, resources and process, which demonstrate a sustainable and repeatable approach to innovation.
To join or find out more about Kinora, visit www.kinora.com.au. To find out more about the 2021 AFR BOSS Most Innovative Companies List, visit www.mostinnovative.com.au.
Pictured above: My Plan Manager Founder and Executive Director Claire Wittwer-Smith and My Plan Manager CEO Jane Kittel
Gretta has a Bachelor of Arts that she finished in 2019. She lives independently in Specialist Disability Accommodation (SDA) that she’s been able to access through the National Disability Insurance Scheme (NDIS). She hires and manages a team of carers, and has secured two jobs through contacts she's made. Rewind eight years, and her life today was just a dream.
If you like this blog in Gretta’s words, you can follow her journey at On Our Own Tracks.
A dream… What does this word mean to you? A hope that your life was completely different or something on your bucket list that you’re hoping to achieve in the future? Whether it’s a recreational activity like skydiving or a goal that you have been wanting to achieve for years like attending university, I’m sure that all you want to do is to achieve this dream as fast as possible.
Hi my name is Gretta and I am a thirty year old woman from Western Sydney. Growing up with severe Cerebral Palsy always meant that journeys to achieve my own dreams seemed to be much longer than my abled bodied peers. When I was around the age of twelve these dreams included one day being able to attend university, and to be living independently in a location that would be close to a town and have substantial work. As I sit here eighteen years later, I am proud to say that I have achieved these dreams, which really has turned them into goals.
By looking at all of these three goals and how I have achieved each one of them, the interesting thing is that every single one has been achieved in very similar ways. The first way is the biggest lesson I have learned and that is patience. The most recent example of this was finally moving out of home. When I thought about this goal when I was younger, I was hoping to be living independently by the time I was 21. Although this goal took me an extra 8 years to achieve, I now recognise that this time and the steps I went through were extremely necessary, as they helped me achieve the skills and lessons I needed to be able to live independently as a mature adult. The other reason that I now feel that this is worth the wait is because I am now in the most perfect situation for me, as I live in a highly supported apartment with access to 24/7 hour care onsite.
"Although this goal took me an extra 8 years to achieve, I now recognise that this time and the steps I went through were extremely necessary, as they helped me achieve the skills and lessons I needed to be able to live independently as a mature adult."
Gretta
As well as being able to live independently I’m also able to manage my own NDIS package. Along with organising all of the payments for my plan and the services I use, I am also able to hire and manage my own team of carers, which is sometimes challenging but worth it as I absolutely love it and definitely have the best carers. Having my amazing team behind me including my carers, family, friends and support professionals, I feel like I am able to live my life my own way just like everyone else my age.
So, if you are anything like I was about fourteen years ago, imagining your life when you are an adult, living your dreams you are obsessing about right now, I encourage you to keep aiming for your goals and don’t worry if they take longer then you expect you will get there in the end.
Hey I’m Gretta, I’m a thirty year old woman from Western Sydney. I also have a tiny bit of Cerebral Palsy affecting my movement and ability to talk. Despite this I love my life and love doing thrill seeking activities such as skiing. I also have a blog called On Our Own Tracks.
My Plan Manager client Linda Setz has a passion for life and packs plenty into each day.
She paints art, goes for walks to the shops and the library, cooks, throws dinner parties, and has a knack for scrapbooking.
Linda worked at Strathmont for 23 years, and for the last five years has been employed at Mobo Group, something she is especially proud of.
“I pack pigs’ ears. I put 6 in a box,” Linda explains.
Linda radiates energy and is grateful to have her brother, Adrian, helping her manage some aspects of her life.
Adrian said understanding the NDIS was a steep learning curve to begin with.
“When I first started helping Linda I struggled because I knew I had to not only learn the NDIS... but the agencies that help Linda with work and things like that,” Adrian said.
“Over the last few years I've learned how to work with Linda and learn about the things that she likes and wants to do, and I help her achieve that.
“We’ve got a good routine and structure now.”
Click below to watch the video:
Adrian said that tech is something that Linda struggled with at first, but quickly got the grip of with a little patience and help from her NDIS-funded support staff.
“The carers do a lot with Linda and I do a little bit as well, so Linda gets to keep her independence when she hangs out with her support staff.
“She was keen to learn the iPad where she connects to her family, particularly her mum who can’t visit as often as she’d like...
And where she FaceTimes, voice messages and watches episodes of Full House.”
Adrian says that My Plan Manager’s service has allowed him to focus on supporting Linda, rather than doing admin.
“When someone told me about My Plan Manager I went YES please!” Adrian said.
“If someone can help me manage the invoices, that will help me to learn more about the NDIS... which freed up my time to learn more about how to help Linda and what the NDIS can provide.”
Click this link to watch the video.
My Plan Manager client Theodora Sakr OAM says she feels like there's a wheel: she's in the middle, and all around are her supports, in the form of family, friends, the National Disability Insurance Scheme (NDIS), MND New South Wales and service providers.
"They're all there, helping me with what I need," she says.
"I'm more grateful for every day and living life to the fullest and not taking anything for granted."
Theodora, an accomplished lawyer who was awarded an Order of Australia Medal in 2021 for her work on behalf of victims of asbestos and their families, says motor neurone disease (MND) has impacted her daily life in every way.
We're sharing Theodora's video story to mark Motor Neurone Disease Global Awareness Day, held on 21 June every year.
MND Australia explains that motor neurone disease affects the nerves (motor neurones) that communicate between the brain and the muscles that enable us to move, speak, swallow and breathe. In people with MND, the motor neurones gradually degenerate and die, causing the muscles to weaken and waste.
If you have MND, or care for someone with MND, MND Australia provides resources and support.
