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Calling all parents of a young adult on the Autism Spectrum – you have just been notified that your offspring’s NDIS funding has been approved – yes, you read that right – so what now? First off, he/she has just become an NDIS PARTICIPANT. So, for the purpose of expediency, I shall now refer to your loved one as a ‘participant’.
How do I know? I’ve been there, truly, it’s rough.
Stay with me. I can help.
By the way, this article is written with young people in mind who present with classic autism. Kids who were previously labelled as having Asperger’s Syndrome can often voice their desires more easily than those with High Functioning Autism. Sometimes those presenting with HFA may offer excellent input; generally, the thinking is left up to you. Imagining a different reality is often difficult for ASD kids.
In a nutshell, the NDIS provides support to eligible Australians with a significant and permanent disability. It is designed to help people get the support they need so that their skills and independence improve over time.
The assistance is comprised of three Support Purposes. NDIS participants’ budgets are allocated to these three areas. (I recommend you download the NDIS Price Guide for reference)
- Core – funding allocated to support daily living. There is considerable flexibility in this area and participants may be able to select specific supports.
- Capital – covers such things as assistive technologies, home or vehicle modifications or Specialist Disability Accommodation. It covers specific supports identified in the participant’s plan.
- Capacity Building – the participant is supported to build his independence from this funding.
Okay, you’ve got that. Now what? Well, there are eight Support Categories that must be used to achieve the goals set out in the participant’s plan.
But I haven’t got a plan yet, I hear you say. Bear with me. We’re getting there.
You can request a Local Area Coordinator. An LAC will: -
- Assist with initial goalsetting when helping participants to create a plan
- Identify where extra help with the plan is needed, and suggest the assistance of a Support Coordinator if required
- Reassess goals when assisting with the review process
Trained LACs can be found here: - https://www.ndis.gov.au/contact/locations
Participants can request the assistance of a Support Coordinator if required. The cost is covered under Capacity Building.
Where do I find a Support Coordinator?
Registered Support Coordination Providers may be found by using the Provider Finder tool in MyPlace. https://ndis.gov.au This tool will enable you to locate providers near you. Every three months the NDIA publishes a list of registered providers in your state on the NDIS website.
There are three levels of Support Coordination. (see NDIS Price Guide)
Level 1 – Support Connection
This provides participants with: -
Level 2 – Coordination of Supports
This level of support includes assistance to: -
Level 3 – Specialist Support Coordination
In situations where a participant experiences complex needs or high-level risks, an expert or specialist approach is necessary. This support is delivered by an appropriately qualified and experienced practitioner, for example a psychologist, occupational therapist, social worker, or mental health nurse.
Specialist Support Coordinators:-
What about those eight Support Categories?
NDIS has an outcomes framework which was developed to measure participants’ goal attainment as well as an overall performance of the scheme.
The framework is comprised of these eight Support Categories (or outcome domains). They help participants determine goals and assist planners to explore where supports are required.
The Support Categories are: -
Now you’re ready to set some goals.
Prior to the inception of the NDIS in our area, I went to every seminar/meeting I could. I recall the words of a woman explaining the NDIS to prospective recipients.
She said “My physically disabled adult son loves going to the pub with his mates on a Saturday afternoon. The NDIS will pay for the transport to the pub, but it won’t pay for the drinks.”
This explanation illustrates that the NDIS provides reasonable and necessary support (the driver and vehicle). The assistance enables the young man to make choices and fosters his desire for independence and social participation.
Be specific when you set your goals, but always be mindful of being ‘reasonable and necessary’. There is a good explanation of this on pg 27 of the Price Guide
What is important to you?
Ask yourself these questions:
Are you looking for a service provider that offers social skills, community participation or work experience programmes?
Have you selected one or multiple service providers for:
- daily programmes
- weekend respite – in or out of home
- holidays (we were so unaccustomed to holidays that this is something that didn’t even occur to me!)
Find therapists and service providers in the Provider Finder – do your research to determine that what they offer suits your needs?
What strengths and abilities have you identified in your participant that will assist you to choose programmes?
What wouldn’t work for you?
What is occurring now that you want to change?
Who are the significant people in your loved-one’s life? Can they offer suggestions? (Sometimes ideas are elusive in the fog that this parent inhabits.) Other parents’ will be a good resource though.
How does the disability impact on the participant? What does he/she long to do but cannot because of the disability?
Make a list of the things you all want for the participant.
Have you collated all the latest doctors’ and clinicians’ reports?
I know it’s soul-destroying concentrating on the ‘disability’. That’s what you had to do in the education system. But remember that the funding you ask for from NDIS will support what the participant wants in order to live a ‘normal’ life. Additionally, it will be what you feel is required to support and promote growth in his/her abilities.
Where will you find information?
Written by: Rhonda Valentine Dixon
Rhonda completed a Diploma of Family History through the University of Tasmania and a BA (Hons) at Griffith University. Her thesis, The Transformative Effects of the Steam Locomotive in English Literature, combines her passions, literature, and steam engines.
Rhonda has co-written three books on teaching communication to students with Autism Spectrum Disorders. She has also published a children’s picture book which highlights tradition and the elderly.
She has contributed chapters to books, in Australia and her native New Zealand and has written for local publications, Sandgate Guide and Redcliffe Guide. She continues daily to document family history and revel in the joy of the written word.