NDIS Know-how

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 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 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 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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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, 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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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 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 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, 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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