Emmilou’s Planning Experience
My dad always says “failing to prepare is preparing to fail”- and for the most part, I believe this to be true. After the elated hype of receiving access, finally , I think I was ill-prepared for the amount of work that was required for a planning meeting. I underestimated the NDIA, and their ability to cut corners at every opportunity…
But more than anything I learned first-hand one of the greatest double-edge swords the whole NDIS process enables; the power of human error and human enlightenment.
My mum always says “If you want something done right, do it yourself”- this I believe to be true! Taking ownership over your child’s NDIS experience is key; we can only try our best- and that is always enough.
We received our planning letter, that Emmilou was eligible for a preliminary plan – duration 3 months for $10,000- which was absolutely not enough (it was a bit of a kick in the gut actually)! I got a call over the phone regarding our situation and to “discuss” my daughter's first plan.
This. Is. A. Trap.
Don’t fall for the phone call planning, make sure you request an in-person planning meeting! If they try to talk you out of it, double down and press harder. It makes a world of difference. There is something so wholesome about being in someone’s presence (and not on the phone) when they discuss their loved ones, and the dreams and desires they have for them… you can feel their love. By feeling this love, it becomes very hard to ignore. Hence; lesson number 1) presence is part of the preparation!
I didn’t hold back on this call, I let it all out every issue/concern/obstacle/challenge we had faced- right back to before Emmilou was born. I think I overwhelmed the woman on the phone… which I have since learned was a desirable outcome. She not only granted me a face-to-face planning meeting, but she marked it as urgent, brought forward the date and sent off a request for consideration of a 12-month plan. (YAY!)
That was a win.
At this time we had already engaged some therapists (privately) to write some reports to support our access process, one of these supports offered advocacy and support coordination. They assisted (minimally I might add) in the process of preparation. So I invited one of them to attend with me, as moral support I guess? She was little support at all. A good advocate and support coordinator should be instrumental throughout this process, offering support, guidance, administration, templates, checklists to name a few.
We have all this and so much more at RippleAbility and this was one of the experiences that catalysed my desire to start this business. I know what I want from my daughter's support coordinator, and ensure that our whole team delivers exceptional service- that is tailored to suit every individual and their families.
The best advice I got for this meeting was “approach every question with this in mind; think of your child’s worst day!”. And I did. I was lucky, the Early Childhood Early Interventions (ECEI) representative that did Emmilou’s plan was really lovely and very empathetic. I have heard and witnessed some horror situations since, but most took a turn for the better. It is important to note that Local Area Coordinators (LACs) and ECICs are employed and paid by the NDIA. For many of them, it is just a job, and they switch off after they clock off. It isn’t personal- but for us, it couldn’t be more personal! They approach each planning meeting with a level of ‘checks and balances', some consider themselves to be financial gatekeepers- like the money is being deducted from their personal accounts. This approach is ridiculous! However nice my ECEI was- she was also quite incompetent or uneducated in the nuances of the NDIS. Which was a shame, as it meant I got a stock standard, out-of-the-box, cookie-cutter first plan, which I of course got reviewed (read how here).
This brings me back to my observation earlier about the double-edged sword of the NDIS; human error and human enlightenment. My ECEI was warm and approachable but did not know how to get the most out of a plan. This is where the support coordinator could have been invaluable. At RippleAbility we have templates that correspond with planners questions and know all the in’s and out’s needed to make your amour for the day. This is something I wish I had, it would have saved me a lot of hassle.
I did take the liberty of filling out the NDIS worksheet booklet, which helped a little with the planning session. It gave me a hand-out to give to the ECEI to refer to after the meeting. I got asked (what seemed like) a million questions, more than I can mention in this short blog. But the gist of it was:
Starting with information about Emmilou, and her immediate supports both formal and informal
The supports she needed as part of her NDIS funded future
Her disability and how it affects her functionality day to day (this took up the bulk of the meeting time)
These questions pertained to her ability to perform day to day activities, mentally/ emotionally, socially and physically
Her likes and dislikes
Some goals for her short/medium/ and long term
The equipment she used, and the equipment she needed
It was a pretty exhausting but elating experience. Exhausting because I was continuously reminded of how much Emmilou’s disability held her back from behaving as a ‘typical’ age-appropriate child would, hard because I was forced to relive and re-tell horrible aspects of her past (that I would rather forget), and demoralising because I realised I was painting a very bleak image of my incredible daughter. But elated because I knew all of this was necessary to ensure her future was prosperous and full of supported opportunities.
The NDIS planning meeting is such a confronting aspect of the NDIS journey. But it is possibly the most critical stage of the access, and it is repeated annually! It is where you have the chance to implement real change, advocate for your child’s adversity and build a village of support around them. It must be afforded the appropriate weight of significance- and taken seriously. This meeting can make an unimaginable world of difference for your child/
So be prepared, and do as much work as you can!
“And will you succeed? Yes! You will indeed! (98 and ¾ percent guaranteed) Kid, you’ll move mountains”
Much love and success to you, Monique x