NDIS approved....Now what?

I still clearly remember when the first NDIS plan for my youngest child (let’s call them K) was approved.  When the plan arrived, my initial reaction was excitement and relief, but over time those feelings gradually changed to confusion and frustration.  

K was transferred over from a previous funding model, so we were thankfully spared the full application process.  After relying on HCWA funding (Helping Children with Autism) up until this point, the budget in K’s first plan seemed extremely generous! We’d no longer have to deal with several different funding models which only partially covered K’s costs, and be counting our pennies every week, or even cancel appointments when we couldn’t cover the difference.

As NDIS was just rolling out in Victoria at the time, and there was a long waitlist for plan managers, I was advised to ask for a self-managed plan. I had no idea what a plan manager was, but happily agreed, as I’d been managing everything for K up until this point. When the plan arrived, K’s LAC rang to share the good news, and took me through all the details.  I didn’t really take in much at the time, as it was all quite overwhelming, but K’s LAC told me to ring if I had any questions, and I felt confident that I’d eventually work it all out.

I quickly discovered everything was not as straightforward as I initially thought.  While the total budget may have been quite a high figure, the structure of the plan limited the use of the funds in such a way that much of it was useless to K. The next few months were a steep learning curve, as I navigated topics such as:

·        The funding categories and their limitations

·        The claims process

·        Service agreements

·        Support Co-ordinators

·        Plan managers

·        Low-cost assistive technology rules and limits

·        Relating services and purchases to goals

·        The varying interpretations of “reasonable and necessary”

One thing that nobody explained to me was the review process, and how every 12 months we’d have to provide up to date reports which would be used by NDIA planners for K’s next plan.  We somehow stumbled through the first couple of plans, but then ran into trouble in the 3rd year.  K’s funding was massively reduced, and suddenly we were back to penny pinching while urgently gathering reports for a review.

There were NDIS group information sessions being held in the early days, but as the Mum of 2 young kids with Autism (one level 2 and one level 3), and suffering a chronic illness myself, I didn’t have the time or energy to sit through a generic session that I didn’t think would be of much benefit.  The problem with situations like this is that you don’t know what you don’t know.  I thought I knew as much as I needed to know.  It was only as issues arose that I realised how many gaps there were in my knowledge and understanding.

Fast forward several years, and my experiences of working, studying, and teaching in the disability sector have massively reduced, or even eliminated, those gaps.  I look back on the early days and want to tell my past self that everything will be ok. 

But I also want to try and save other families some of the overwhelming frustration that I suffered.  Every situation is unique.  Generic courses may provide some basic information, but what I really needed was someone to sit down with me and properly explain exactly how my child’s plan was structured, and how it could be used to support their goals. 

NDIA rarely fund Support Co-ordinators for young children, as they feel it’s the parent’s responsibility to manage their child’s supports and funds.  But what nobody tells you is that there’s funding in the plans for parents and carers to receive training on how to understand and manage the plan. You only discover the funding once you understand how it all works.  Oh, the irony!

Whether you’re at the beginning of your NDIS journey, or many years down the track, if you’re feeling overwhelmed and frustrated, or are just seeking some simple, straightforward advice, please reach out for help.  You are not alone.