NDIS Know-how (Melanie Dimmitt)

This episode is part one of Mel's chat with Lisa Grech, a researcher, psychologist and proud mum to Hannah, her 20-year-old daughter who has a rare genetic condition and intellectual disability. Lisa herself has multiple sclerosis (MS) and chronic mental health issues. She co-parents and cares for Hannah with her ex-husband, Tim.  

Lisa uses what she calls an “aggressive” strategy when it comes to Hannah’s NDIS plan reviews – and she advocates more broadly around inequality issues within the scheme. In part one of Lisa and Mel's chat, Lisa shares how she assertively and effectively gets what her family needs from the scheme.

Link to Lisa Grech and Carly Findlay’s article: https://hireup.com.au/news/who-has-the-right-to-talk-about-the-issues-facing-people-with-disability/

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In this episode, Mel chats with a bonafide NDIS expert. Carl Thompson is a former NDIS Local Area Coordinator (LAC) and the founder and director of NDIS service provider Sort Your Support. Carl's also an NDIS participant, so he knows this scheme inside-out and back to front.

Carl and Mel's conversation takes a deep dive into NDIS plan reviews - what they are, how to ask for them and what the process looks like - from internal reviews to the Administrative Appeals Tribunal. Notepads at the ready!

Link to Sort Your Support: https://sortyoursupport.com.au/

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This episode is part one of Mel's chat with Stephanie Wicks and Sandy Golder, the founders of an organisation that supports families raising kids with disability, called Thrive Tribe & Co. Steph and Sandy are both raising daughters with invisible disabilities, and share their advice on how to get your child and family's needs seen (and funded) by the NDIS.  

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In this episode, Mel chats with Paul Pozzobon, a father of three whose youngest, 11-year-old Max, has a condition called cerebellar ataxia. Paul is the managing director of a large paediatric therapy centre in Sydney, and has helped many parents undertake the tricky, time-consuming art of building a team of top-notch therapists around their kid. In this chat, Paul shares his advice on what makes a great therapist, how to find them, and how to break up with not-so-great ones. He also explores the role that therapists and therapy centre communities can play in supporting your whole family. 

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In this episode Mel chats with Jo Abi, a journalist, media commentator, author and autism advocate who has three children - two sons, Philip, 18, Giovanni, 15, and her daughter Kitty, 13. 

Philip and Giovanni both have autism and are on the NDIS - and it looks like Kitty will soon be joining them, as she’s currently being assessed for an autism diagnosis. 

Jo has a lovely new partner who also has autism - and who she met at an Autism Awareness Australia event - but for the past five years, she’s been a solo mum. Not an uncommon thing to be, in the disability family space. 

Jo shares her tips for fellow solo parents navigating the NDIS and explores how things change when kids on the scheme grow into young adults.

Hear more from Jo at the Autism Awareness Australia's AUStism 2023 conference: https://www.autismawareness.com.au/events/austism-2023

Find top-notch support workers for your family: https://hireup.com.au/

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In this episode Mel chats with Ingerlise Svaleng, the founder of "kindness project" 21 Gifts, about how we can advocate for our child’s strengths and passions in a system that's geared toward their so-called deficits.

Ingerlise is from Norway and now lives in the Sutherland Shire of NSW with her husband and two daughters, four-year-old Lola and Maia, who is seven and has Down syndrome.

Through partnerships with 120+ hospitals across Australia and New Zealand, 21 Gifts delivers beautiful little suitcases, bursting with gifts, to parents of babies who’ve just received a Down syndrome diagnosis. You can find a link to this brilliant organisation here: twentyonegifts.com

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In this episode Mel chats with one half of the phenomenal podcast due that is the Too Peas - Mandy Hose. Alongside Kate Jones, Mandy hosts Too Peas in a Podcast, a weekly audio offering exploring the ups and downs of life as parents to kids with disabilities.  

Mel speaks with Mandy about her experience of navigating the NDIS on behalf of her 17-year-old twin daughters, both of whom have hemiplegia, a form of cerebral palsy. Their conversation covers why Mandy chose to be plan managed with support coordination, what it actually means to have support coordination, and how Mandy is feeling about the next big transition as her girls gear up to leave school and venture into adulthood.  

Link to the Too Peas in a Podcast episode on support coordination: https://toopeasinapodcast.com.au/pea-fessionals-andrea-and-felicity-talk-about-support-coordination-for-your-ndis-plan/

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In this episode Mel chats with Stacey Touma and Bree Pennie, both of whom have kids on the NDIS, and both of whom work for a wonderful organisation called Kindred that supports families raising kids with disabilities. 

Stacey lives in Brisbane with her husband, Mark, and their three children, including Alex, 10, who has a rare genetic condition called Williams Syndrome. Bree lives on the south coast of NSW with her partner, Mitch, her daughter Dylan, 9, and her seven-year-old son Dax, who was born with Congenital Cytomegalovirus (CMV) and has physical disability. 

In this conversation we cover parent and carer wellbeing, and the relatively unknown concepts of parent capacity building and coaching. 

Link to Kindred's Healthy Mothers Healthy Families program: https://healthymothers-healthyfamilies.com

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In this, the first episode of the NDIS Know-how series, Melanie speaks with Georgia White, a working mum whose six-year-old daughter Rosie has a rare genetic condition called Rett syndrome, on how to best prepare for your child's NDIS planning meeting.

Study about intensive therapy benefits: https://pubmed.ncbi.nlm.nih.gov/11995891/

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In this episode, Mel chats with Sabikah Rizvi, a Newcastle-based mother of four boys. Here middle two, Abid and Taha, who are 10 and 8, both have cerebellar hypoplasia and ataxic quadriplegic cerebral palsy, among other diagnoses. Sabikah shares how she manages the colossal amount of admin and organisation that comes with having two kids on the NDIS, how she’s fought for better plans - all the way to tribunals - and how she’s made time for her own mental health in amongst it all.

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In this episode Mel chats with Benison O'Reilly and Seana Smith - co-authors of what’s known as “the essential guide” for parents of children with autism - about their new, fully updated edition of The Australian Autism Handbook. Benison and Seana both have sons with autism and this conversation covers some of what’s changed in the years since they launched the first edition of The Australian Autism Handbook back in 2008. The NDIS, of course, has majorly shaken up the disability space - and Benison and Seana share their advice for autism families who are new to the scheme. 

Buy The Australian Autism Handbook from all good booksellers: https://www.simonandschuster.com.au/books/The-Australian-Autism-Handbook/Benison-OReilly/9781925183849

Read an interview with Benison and Seana: https://hireup.com.au/news/the-australian-autism-handbook-is-reborn/ 

Find top-notch support workers for your family: https://hireup.com.au/

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In this episode Mel chats with Brisbane-based Sarah Thomas, founder of an incredible blended tube-feeding product called Wholesome Blends. Sarah is a single mum of twin, 14-year-old boys, Cohan and Lewis. When the boys were three, Lewis had a stroke that led to several diagnoses including cerebral palsy and epilepsy. 

Sarah knows the NDIS from both the participant and provider perspective. She shares advice around advocating for our kids, and making sure we secure funding for every ‘consumable’, as they’re called, that they need.

Find Sarah's Wholesome Blends website here: https://wholesomeblends.com.au/

Vote for NDIS Know-how to be in the running for the Listener's Choice award at the Australian Podcast Awards here: https://australianpodcastawards.com/vote

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NDIS Know-how is coming back strong after the holiday break with the woman who got Beyoncé and Lizzo to change ableist lyrics in their songs. Hannah Diviney is a disability advocate, writer, actor and creator of an incredible media company called Missing Perspectives. You might have seen her on the pages of Marie Claire magazine, which crowned her The Voice of Now, on ABC’s Q+A panel, or starring in her breakout acting role in the new SBS series, Latecomers.

Hannah lives with her parents, two younger sisters and loyal border collie in Sydney. She has cerebral palsy and uses a wheelchair to make her way through the world. In this chat she tells Mel about her experience as an NDIS participant, her hopes for the future of the scheme, and shares her tips on how to advocate for yourself or someone you love.  

Follow Hannah's work on twitter: https://www.instagram.com/hannahthewildflower/

And instagram: https://www.instagram.com/hannahthewildflower/

Visit her media platform, Missing Perspectives: https://www.missingperspectives.com/

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In this episode, Mel chats with paediatric occupational therapist, Prue Nix, a clinical director at a large, Sydney-based therapy provider. Prue oversees the creation of at least 20 NDIS reports every week, and shares her advice on how parents can help their kids' therapists write good ones. She also walks us through how to make the most of each section in an NDIS report, from goals through to recommendations.

ECEI NDIS Report template: https://www.ndis.gov.au/media/2639/download?attachment
Types of disability evidence/assessments: https://www.ndis.gov.au/applying-access-ndis/how-apply/information-support-your-request/types-disability-evidence

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In this episode Mel chats with Stacey Phillips of Tubie Fun, a business that makes products to support families and people who tube-feed. Tubie Fun was inspired by Stacey's son, Callum, who’s been tube-fed for pretty much his whole life. Callum is now six, and is one of three boys being raised by Stacey and her husband, Anthony, in Brisbane.

Both Callum and his brother Harry, 8, have NDIS plans supporting various diagnoses including level-two autism, ADHD and Ehlers-Danlos syndromes (EDS), which is a group of conditions that affect the body’s connective tissue.

Stacey, like Callum and Harry, has EDS. She also has a condition called postural orthostatic tachycardia syndrome (POTS), which is a blood circulation disorder. Stacey is in the process of applying for her own NDIS plan and shares some of this experience, as well as her son Harry’s transition out of early childhood early intervention (ECEI) to the over-7s' arm of the NDIS. 

Mel and Stacey also talk about the benefits of having allied health therapists supporting kids at home, rather than in clinics, and share some nitty-gritty NDIS admin advice.

Visit Stacey's business, Tubie Fun: https://tubiefun.com.au/

Find top-notch support workers for your family: https://hireup.com.au/

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This is the second part of Mel's conversation with Lisa Grech, a researcher, psychologist and mum to Hannah, who has a rare genetic condition and intellectual disability. If you missed part one, where Lisa shares how she fiercely advocates for her daughter, who is an NDIS participant, skip on back and check it out. 

In this episode Lisa talks about the issue of inequality in relation to the NDIS – a topic she’s particularly passionate about, having come from a disadvantaged background herself. She also shares how she feels the scheme is going in the area of supporting participants' mental health. 

Explore Hireup's library of webinars and free resources to help you navigate different elements of the NDIS: https://bit.ly/HU_NDIS

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In the final episode of season two, Mel chats with tech entrepreneur, brand expert and NDIS participant Steve Ralph. At the end of 2017, Steve misjudged a jump into a swimming pool and sustained a spinal cord injury that saw him become a quadriplegic.

Steve now needs significant support to go about his day and he’s got some very cool assistive tech to help him get out adventuring, like modified bikes and kayaks and an all-terrain wheelchair. He shares how he manages his NDIS funds with the help of a support coordinator and his advice for people who are new to the scheme. 

In very exciting news, Steve is hosting a new, soon-to-launch podcast for Hireup called Life Rolls On. This series sees Steve chatting with other people who’ve experienced life-changing injuries – and sharing the challenges and triumphs they've had since. 

Listen to the Life Rolls On trailer: https://omny.fm/shows/life-rolls-on/life-rolls-on-trailer-a-podcast-about-living-well

Get in touch with NDIS Know-how topic and/or guest suggestions: melanie.dimmitt@hireup.com.au

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In this episode, Mel chats with photographer Michele Bailey, a mother of three sons including 23-year-old Alec, who has an intellectual disability. Michele is the founder of a platform called Social Knowledge Skills, which champions accessibility and inclusion, and she also works in disability support. Michele talks about why being plan-managed, rather than self-managed or NDIA-managed, is the right fit for her family - and sheds some light on the reality of requesting an NDIS plan review. She also shares why it’s important, as a parent navigating the scheme on behalf of their child, to be confident - and what she calls a “nice, happy, positive squeaky wheel”.  

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In this episode Mel chats with her friend and Hireup colleague Briana Blackett. Bri is the sole parent of her two sons, Max, who is 15, and thirteen-year-old Freddy, both of whom have autism. Bri is also a senior journalist and seasoned advocate. This conversation covers how to advocate for our kids - especially those with autism - at an NDIS planning meeting, the liberating benefits of being plan managed, and what changes to our government and the NDIS could mean for our community.

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In this episode Mel chats with Tara Thompson, the mother behind the wildly popular Willow’s CP Journey instagram account. Here Tara shares snapshots of her day-to-day life as a mum of three girls - Ava, who’s nine, four-year-old Indie, and Willow, who’s seven, and has cerebral palsy and autism.  

This conversation covers the power of our community - something that is front of mind for Tara in her new role at Kindship, an app that connects parents in the disability space. Mel also gets Tara’s advice on how to make home therapy fun - something she’s an absolute master of.

Link to the Kindship app: https://www.kindship.com.au/

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In this episode Mel chats with Hayley Thiele, a fellow parent of a child on the NDIS. Hayley is the director of Alee Disability Support Services, an organisation that helps families on the NDIS, primarily through support coordination.

Hayley and her husband, Dave, live in regional South Australia. They have four daughters, the youngest of which is Pippa, who is four. Pippa has Wiedemann-Steiner syndrome and needs significant support to go about her days.

In this chat, Hayley breaks down what "parental responsibility" means in the context of the NDIS and shares tips on how to effectively communicate your family's need for support.  

You can find visit the Alee Disability Support Services website here: https://www.instagram.com/aleedisabilityss/?hl=en

Get in touch with the Alee Disability Support Services team here: hello@aleedisability.com

Want more tips for navigating the NDIS? Visit Hireup's Navigating the NDIS portal: https://hireup.com.au/navigating-the-ndis/

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Aussies will soon go to the polls - so NDIS participants and their families want to know, how can we make our vote count toward a better scheme? My guest for this special federal election episode is disability rights campaigner Elly Desmarchelier, who is a spokesperson for Every Australian Counts and their Defend Our NDIS campaign.  

Elly has been all over the media, hosting numerous campaign events and, as she says, finding new and exciting ways to get the NDIS on to the election agenda. In this chat we talk about Elly's own experience on the NDIS, why the NDIS needs defending, and ways we can educate ourselves before casting our vote. 

For more information on how to defend our NDIS, head to the Every Australian Counts website: https://everyaustraliancounts.com.au/

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In the second episode the NDIS Know-how series, Mel chats with Linda Fenech, a fierce advocate for her daughter, seven year old Lucy, who has cerebral palsy. Linda and Mel cover a lot of ground including the importance of framing your child’s NDIS funds as an investment, bringing video evidence to your NDIS planning meeting, and including an NDIS Carer Statement in your plan material. 

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In this episode Mel chats with Heather Cox, a Sydney-based marketing professional and mother of two daughters. Heather's youngest, six-year-old Arianna, has Sotos syndrome, a rare genetic condition characterised by overgrowth and delayed development. Heather is a gun at NDIS goal-setting and shares how she's made Arianna's NDIS plan work for their family. Spoiler alert: sometimes this means choosing the playground over therapy sessions. 

Links to family support organisations:
Plumtree: https://plumtree.org.au/

Kindred: https://kindred.org.au/

Sotos Syndrome Australasia: https://sotos.org.au/ 

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In this episode Mel chats with Lisa Duffy who is, hands down, one of the loveliest people working in Australia's disability sector. Lisa started out as a physiotherapist before finding her true calling in complex case management and working with people with disability to navigate their support options in the 10 years prior to the NDIS rollout. 

Since the NDIS came along, Lisa’s been helping people gain access to the scheme and plan for NDIS reviews. You can currently find her at Disability Services Consulting (DSC) where she does support co-ordination, training and writing to build capacity and understanding around the NDIS. 

In this conversation Lisa takes us through the steps - or as she likes to describe them, the train stations - that we need to stop at on our way to accessing the NDIS. She also offers up some priceless pointers on how to get fluent in NDIS language and a bundle of useful links that you'll find below:  

NDIS Eligibility checklist:
https://www.ndis.gov.au/applying-access-ndis/am-i-eligible
NDIS Operational Guideline around NDIS Access:
https://ourguidelines.ndis.gov.au/home/becoming-participant/applying-ndis
https://ourguidelines.ndis.gov.au/home/becoming-participant/applying-ndis/do-you-meet-disability-requirements#caused-by-impairment
NDIS Access Evidence:
https://ourguidelines.ndis.gov.au/home/becoming-participant/applying-ndis/how-do-we-weigh-evidence-disability
NDIS List A conditions:
https://ourguidelines.ndis.gov.au/home/becoming-participant/applying-ndis/list-conditions-are-likely-meet-disability-requirements
NDIS List B conditions:
https://ourguidelines.ndis.gov.au/home/becoming-participant/applying-ndis/list-b-conditions-are-likely-result-permanent-impairment
NDIS Access Request Form/application:
https://www.ndis.gov.au/how-apply-ndis/what-access-request-form

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In this episode Mel chats with Alexandra - or Alex - Browne, a senior support coordinator and recovery coach in the NDIS space. Having started out in occupational therapy, Alex has been working in the disability sector for a decade and her own son, Ethan, is on the NDIS. 

Alex is an expert on evidence - the reports, assessments, letters and information we need to provide the NDIS in order to paint a picture of who our family is and what we need to live an ordinary life. 

Part one of Alex and Mel's chat covers why we need to include something Alex calls a "comparison document" in our evidence, how to talk about our kids through a functional - rather than medical - lens, and the critical components of our NDIS evidence. 

Useful links:

NDIS Act 2013 Section 34 Reasonable and Necessary Supports: https://www.legislation.gov.au/Details/C2019C00332

NDIS Rules 2013 NDIS Rules 2013.pdf: https://www.legislation.gov.au/Details/F2013L01063

The six functional domains: https://acrobat.adobe.com/link/review?uri=urn:aaid:scds:US:133077ec-7487-3022-b5ba-fa85787fafa4

Hireup's Navigating the NDIS portal: https://hireup.com.au/navigating-the-ndis/

See omnystudio.com/listener for privacy information.

In this episode Mel chats with Alexandra - or Alex - Browne, a senior support coordinator and recovery coach in the NDIS space. Having started out in occupational therapy, Alex has been working in the disability sector for a decade and her own son, Ethan, is on the NDIS. 

Alex is an expert on evidence - the reports, assessments, letters and information we need to provide the NDIS in order to paint a picture of who our family is and what we need to live an ordinary life. 

Part two of Alex and Mel's chat covers how good evidence is structured, why it’s important to back yourself up from multiple sources of evidence, and why we need to push back on our providers when their evidence isn’t up to scratch. 

Useful links:

NDIS vs Mainstream NDIA Operational Guideline: https://ourguidelines.ndis.gov.au/how-ndis-supports-work-menu/mainstream-and-community-supports/who-responsible-supports-you-need

The NDIS Act: Reasonable and Necessary: https://teamdsc.com.au/resources/ndis-act-part-1

Hireup's Navigating the NDIS portal: https://hireup.com.au/navigating-the-ndis/

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In this episode Mel chats with Bernard Namok Jr, host of Yarning Disability, the first podcast dedicated to Aboriginal and Torres Strait Islander people with disability. Bernard has a long history in radio broadcasting and, since experiencing disability first hand and in his family, he's now working as a community advocate for the First Peoples Disability Network in Cairns. 

In this conversation Bernard shares his experience of navigating the NDIS on behalf of his brother, who is a participant, and how he believes the scheme can better serve Indigenous communities.

Find the First Peoples Disability Network podcast, Yarning Disability, here: https://fpdn.org.au/podcast/

Find Tanika Davis' The I Am, Movement here: https://theiammovement.com.au/

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In this episode Mel chats with Sarah-Ann Taylor, a Sydney-based brand communication expert who works in PR and is a mother of two boys, two-year-old Roman and Franklin, who’s five, and has cerebral palsy. 

When it comes to navigating the NDIS, Sarah-Ann does her research and she doesn’t take no for an answer. This chat covers how she makes sure that Franklin isn’t waiting months - or years - for the supports he needs and how new changes to the NDIS can help us to do the same for our kids.

This episode of NDIS Know-how is sponsored by PAEDs Education. Mention 'NDIS Know-how' for 10% off their specialised courses when you email PAEDs Education: contact@paeds.education

Visit the PAEDs Education website for more information: https://paeds.education/cms/

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In this episode, part two of Mel's chat with Stephanie Wicks and Sandy Golder,  the duo behind Thrive Tribe & Co share their tips for how to look after yourself, as a parent navigating the NDIS on behalf of your kid. 

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