Scary NDIS made easy - I hope!!!

Some of you may be aware that the NDIS rollout is something I have been preparing for both personally and professional for several years. Because I have had a few people contact me privately, recently, I thought I would post a public post about what I have learnt about the process..... Please note - I am not an expert, I am sharing what I have learnt/been told/experienced. I welcome comments or other experiences to be shared as this is new for ALL of us.....

If you have a child under the age of 7 - STOP READING!!!! Please see my previous post re the ECEI program and link.

For the rest of you - keep reading!!!!

While NDIS will need some form of notification about the "lifelong disability" ie diagnosis and it aint going away, it’s NOT the focus of the support. The support will depend fully on how you or your child (making it general as I am aware some adults with needs are also on this group) can function with daily activities. 

From the NDIA Price list* "there are 3 categories of support purpose aimed at increasing Independence, inclusion and social & economic participation. The 3 areas are: core, capital and capacity building"

Core is a support that assists someone to complete activities of daily living and work towards goals.

Capital is an "investment" such as assistive technology, modifications to vehicles or homes or specialist disability accommodation.

Capacity Building is support that helps build a persons independence.

ALL of the above is to help someone achieve goals. The NDIS have 8 domains they look into:

• Daily living
• Home
• Health and Wellbeing
• Lifelong Learning
• Work (employment)
• Social and community participation
• Relationships
• Choice and Control.

All the above can be found on various websites – including the NDIS price guide.

WHAT DOES THIS ALL MEAN???

If you have been receiving any funding  – they will consider this BUT they need to look at the goals – why were you receiving support? What were the expected outcomes? Where would that fit in all the above???

We have been planning for this for years. My first tip - PLAN PLAN PLAN. 

Link your goals with the above and get documented evidence from professionals to back your needs…. Here are some examples:

Mr C has PICA – see my other posts ;). Basically he doesn’t eat nutritional food and would prefer to eat paper. We have this in a formal diagnosis from a paediatrician. Linking with a dietician and nutritionist has not helped.  We want him to increase his range of food – a goal. One way could be through food therapy or even a group for “picky eaters”. Both of these would fit in capacity building. To follow this up we need meal prep at home help – and this is CORE SUPPORT- it may fall under daily living.

Miss M gets very anxious around a large group of people – but we don’t want her to be socially isolated (Goal – to be actively involved with a social group – "Social and community participation"). So under core supports we will need a "companion" to be with her for outings. Under capacity building - therapy to give her more strategies to deal with the anxiety.

Focus on what the goals are – for me it’s for all three of my kiddies to live independent lives (long term), to be able to form friendships, participant in the community and to have good health and wellbeing. We have many short term measurable goals that fit into these areas – a couple are outlined above.

So - What are your goals???

REPORTS!!!! LOTS OF THEM

The other tip I HIGHLY recommend is for an Occupational Therapist to prepare a “Functionality Report”. Also any other specialists you may have in your team (Speech, counsellors, teachers, daycare etc etc). Send ALL your reports when you “Request Access”. You do not need a specialist nor even a GP to fill in the form if you have all these reports….. Send in current (to show now needs) and any older ones (to show the ongoing needs). 

We focus on 5 areas with these reports that will fit nicely with the NDIS Domains, in fact during a planning meeting these exact question are asked!!!  

Mobility – think not just physical but how emotions/anxiety can impact movement in the community and home

Communication – including written and the ability to read body language. Many only consider the verbal method of communication

Social Interaction – can they form friends, keep friends?

Learning – short term memory issues? Does someone need to be shown the same activity over and over? Need support until they “get it”

Self-management – ability to handle money or, for children, the concept of money. I am not sure but even the ability to "self-manage" emotions may fit in here!!  Start thinking outside the box!!!!

Self Care – bathing, eating, home duties, medications, safety to self (Miss Shy has absolutely no fear of anything! Constant supervision is needed!!!) etc.

And my FINAL TIP – don’t do this alone. Find a friend to support you or better yet an advocate at the planning meeting. Don’t forget to show or refer to the reports again.

I do realise this is a lot to take in. It’s all so new and can be very confusing and frightening.

PS – feel free to share this if you find it helpful and of course questions and comments are welcome!!!