Emmilou’s Plan and Plan Review Experience
Have you ever felt like sometimes things are too good to be true…and then they are? Well, that was our experience with Emmilou’s first NDIS plan...
Once we got over the hurdle of access (read prelude blog here), we then had to deal with the planning phase. Hot tip “the more work you do in the initial access phase means less work in the planning stage”. It is my opinion that one of the most frustrating things imposed on our children is the constant requirement to “conform”. To fit into a neat box; that is quantifiable, predictable and propagatable. There are so many institutions that are set up this way; schools… the work force… housing…Centrelink…the NDIS. You must tick boxes, there is always some algorithm that underlines the “process and obstacles” of selection. The more ticks you have = the more support you get. Seems like a simple process – until your child falls outside of the checklist.
This has been a constant battle for us with Emmilou. Her conditions are rare, her diagnosis ever changing and her ability variable. Which meant that “ticking” boxes was hard. So we had to be creative and think outside the box. The best advice I ever got about going into a planning meeting was “answer every question as if it was the worst day”. Simply put, this is no time to be modest, or make light of situations – and it is absolutely no time to pull your super hero undies on and run the overused “I’m. Fine.” routine. This is a chance to let it all out; the hardship, the challenges, the struggle, the battles, the worries, the concerns, the gut feelings, and the trauma. If ever there was a time to let out the water works – it’s in your planning meeting.
The person sitting over the other side of the table, with access to the “checklist” is only human, and unless they are a callous and calculating individual they will sympathise with your plight. Why else would they do this job? I know that what I am asking of you does not follow suit with our desire to see disability as the social construct of the word (in a positive light), and I also know how demoralising it is to shed light on the darkest aspects of your child’s ability – it goes against the very essence of parenthood. But it is essential. If your child can climb up stairs 90% of the time; focus on the 10% they can’t – these are the days you need support. If your child can attend school or access the community 4 days a week, focus on the other 3 days they can’t – these are the times you need support. If your child has medications administered ¾ of the year round; don’t specify this detail – because you can’t ever anticipate that this won’t be necessary all year round. Work things out based on your absolute WORST days.
So our planning meeting went off OK. I cried a lot, I talked a lot and I handed over a LOT of paperwork and evidence (copies of course- no originals!). I had a “support coordinator” attend. Although her presence was more of a formality than of actual use. A great support worker should be an asset – not just a decoration. Luckily our team at RippleAbility are both! (for details on our support coordination service click here).
After some time (roughly a month) we received Emmilou’s first plan in the mail. It was received with mixed emotions. I was relieved to have it, also elated to finally feel affirmed from the pretence that my daughter had a viable disability, saddened by the prospect that she needed additional support for life, but grateful that we have a system that can provide for her wellbeing and holistic livelihood. I was a bit of a mess.
The initial plan stipulated her entire funding to be $30,000. If that seems like a lot – you are sorely mistaken. I have since learned that this is almost a basic “run of the mill”, “spit me out”, “template” first plan. IT. WAS. NOT. SUFFICIENT. Having done some preliminary ringing around to my daughters prospective providers, I had done a quick financial survey of a year’s supports. $30,000 was like a drop in the ocean of what she would need to be adequately supported. In order to create a meaningful Ripple around my daughter, I would need a larger ‘drop’. So I decided to go for a plan review.
There are four things to remember when deciding to go for a plan review:
Make sure you are prepared, able and willing to do more work.
Remember that a plan review is the ENTIRE plan, not just the bits you aren’t happy with – so be prepared to sacrifice in some areas, or be bullet proof, so you don’t need too.
Pick your battles. Really consider if this change is significant enough, carefully weigh up your options and risks.
To review a plan you only have a 3 month window of opportunity; once this lapses; it is tough luck really.
So I did the above and decided to fight this one out. I began by reaching out to my ECEI (early childhood early intervention) partner. I told her I was not happy with the plan and she instructed me on the process for review. I wrote an email/letter addressing my concerns (it was brief and to the point) and sent it off to the respective department. I then eagerly waited for a call which, when it did come, was extremely insightful and inspiring. In a matter of only 30mins, Emmilou’s plan had almost tripled in size of available supports. I was also able to build in some more flexibility and even an opportunity to engage a component of funding that wasn’t even accounted for in the initial $30,000. It was a success!
I can just imagine you right now scratching your head reading this… how can it have changed so rapidly and so significantly. The answer unfortunately is both a blessing and a curse: the NDIS in essence is a humanesque beast – subjective to human error, empathy and experience. I had been witness to both ends of the spectrum. As Western Australia was new to the NDIS at this point, my first planner lacked experience, and know-how. This reflected in her ability to maximise support for Emmilou through the plan. However, the second planner lived interstate where the NDIS was far more established – his knowledge meant that Emmilou’s plan was far more inclusive, accessible and all round adequate. In this instance his knowledge made all the difference. I have since learned that support coordinators have the ability to pre-design and pre-empt an outcome for a planning meeting; this is what RippleAbility can offer you.
A full-proof template that can effectively be ‘submitted’ into the algorithm and spit out a near perfect plan – designed, developed and then distributed by means that work for YOU.
If I had this option at the beginning of my journey I absolutely would have jumped at the opportunity and this was one of the many reasons why I wanted to start RippleAbility. So others didn’t have to jump the hurdles I had to. Let us do the work for you, to engage a support coordinator or see what we offer – click here.
Much love, and success to you!
