Navigating the NDIS – Lana’s story and advice
It’s always handy knowing someone with expert knowledge and experience when you need it. We’re lucky to have Lana in the Aussie Hands family who has both personal and professional dealings with the NDIS (National Disability Insurance Scheme) and she’s happy to share her insights so that your experience can be as smooth as possible.
We will start navigating the NDIS shortly, but let’s first learn a little bit about Lana. A few years ago, her mum found Aussie Hands on Instagram and suggested Lana should connect. For a while she followed us on social media, as an Aussie Hands member, then when our call for board members went out, she took the plunge and became Secretary in October 2021.
‘Before joining Aussie Hands, I had never met anyone with a hand difference and didn’t realise there were so many of us. It was what I’d always dreamt of, finding other people like me, but it was beyond my wildest imagination to believe I would meet Dave and start a family,’ Lana admitted. But that match-up is another story which was covered in a Take 5 magazine article in October 2022.
Lana has 7 fingers, 4 on the left hand and 3 on the right, which has the medical term Ectrodactyly, but stems from having Ectrodactyly Ectodermal Dysplasia Cleft Syndrome (EEC). ‘As well as my hand difference I was born with some webbing in my toes, without sweat glands or tear ducts, I live with urinary reflux and a very minor cleft lip and palate, which is barely visible,’ she added.
Lana and her fiancé Dave are expecting a baby boy and have found out he will be born with unique hands, feet and a bilateral cleft palate. Lana and Dave have both sprung into action to support their son and ensure he has robust, quality, and supportive care in place for when he is earth side, including navigating the NDIS application process.
Now, getting back to the NDIS. ‘I was born in New Zealand where there was limited access to funding for a hand difference. NDIS is fairly new to Australia, and I applied for funding a couple of years ago for my hand difference and EEC. My application was declined due to insufficient evidence, so since then I’ve done more research about what would help it succeed,’ Lana explained.
‘Growing up in and around the disability and medical world, I first started as a support worker and then progressed into coordination and management roles in New Zealand and Australia. In 2022, I started my own business doing Specialist Support Coordination to help individuals and their families with NDIS plans navigate the system, from implementation right through to the review stage. I haven’t supported anyone with a hand difference yet, but would really love to,’ she said.
Lana explained that a health professional has to classify any impairment/disability as permanent. The Access Request Evidence form needs a GP, paediatrician or specialist to sign it and include information about the hand difference and the functional impact on the person long term.
What can help get an application across the line is an OT (occupational therapist) assessment, which looks at daily life functioning. Parents need to think about how the hand difference impacts their child’s daily life and what support would be helpful. This assessment can also include observations made by other people, like a teacher or family members, about what the child can and can’t manage.
An interpretation of your own functioning is also important – how you do things, communicate, how it affects your social life, learning, connection, self-management of work and personal care.
If applying for a child, it’s very important to do a Carer Impact Statement to explain how the hand difference impacts your life as a carer. Incorporating statements about the emotional impact on your child and family are also valuable. It’s a good idea to put all your information in writing because sometimes, things aren’t captured or can be missed in meetings.
There are 3 budgets within a NDIS plan:
Core Supports – consists of daily living supports, support workers for self-care or accessing the community. This includes access to prosthetics, their modifications and maintenance.
Capacity Building – this is the area Lana is involved with, which includes getting access to specialists such as an OT, physiotherapist, psychologist, prosthetist, social worker etc. It covers health & well-being, learning and education, such as demonstrating to teachers what a child’s needs are or looking at how a workplace environment needs adapting.
Capital – the 2 categories in this are Assisted Technology (home modifications, hand-rails, grip bars, clothing, equipment) and Motor Vehicle modifications such as steering wheel or gear stick controls.
And then there are different financial ways you can choose to manage a NDIS budget.
Self-management – after you’ve used a service, you send NDIS the invoice from the provider, NDIS then pay you and you pay the provider. Self-management also gives you greater flexibility to choose a provider who isn’t necessarily NDIS-approved/registered, you don’t have to follow the NDIS price guide and can negotiate rates.
Plan management – you use a middleman, like an accountant, who is called a plan manager and pays the bills from providers. Again, you don’t have to use NDIS-approved/registered providers, so have some flexibility with accessing support services.
NDIA management – you won’t see any invoices and the service provider claims via a NDIS portal. There are more restrictions with this as you must follow their price guide and list of approved providers.
For general decision making, you can also have a plan nominee who can help you manage your plan and liaise with the NDIS on your behalf, such as a family member or parent/carer.
Lana’s advice is that if your application is declined, don’t give up. There are support coordinators who could help you, some willing to do it free of charge, to boost your next attempt.
Clients find Lana through word of mouth, existing relationships and recommendations. Despite moving from Perth to Melbourne in 2022, all her WA clients have stayed with her as she builds up a client base in Melbourne.
If you’d like advice on navigating the NDIS and how it could help you, Lana is happy to have a chat. You can reach Lana on firstname.lastname@example.org
Many thanks Lana for sharing this overview and giving people plenty of tips to help decide if or when they go down this path.
More Links & Resources
Here are additional website links that parents and families can access to find out more about the NDIS application process and how to support someone connected with the NDIS:
- Early Childhood Early Intervention (ECEI) Approach: This NDIS webpage provides information specifically tailored for families with young children (aged 0-6) who may be eligible for early intervention supports. It outlines the ECEI approach and how to access supports through the NDIS.
- NDIS Access Checklist: The NDIS Access Checklist is a useful tool that helps determine eligibility for the NDIS. It provides a list of questions to assess if an individual meets the access requirements.
- Carers Australia: Carers Australia is a national organization that provides information, support, and resources for carers. Their website offers guidance on accessing the NDIS as a carer and understanding the available supports.
- Every Australian Counts: Every Australian Counts is a campaign advocating for the rights and inclusion of people with disabilities. Their website provides comprehensive information about the NDIS, including application processes, planning, and accessing supports. Explore their resources
- NDIS Participants and Families: This section of the NDIS website offers a wealth of resources and information for participants and their families. It covers topics such as planning, budgets, managing supports, and finding service providers.
- My Place Online: My Place Online is an online portal for NDIS participants and their families. It allows users to manage their NDIS plans, review budgets, track funding, and connect with service providers.
Remember to also check your local state or territory-based disability support organisations, as they may offer additional resources, workshops, or support services specific to your region.