By Kelly Wilton
Recently I had an NDIS review meeting. You know the ones that make you feel sick leading up to it (don’t they all?).
The preceding months had been a not-so-merry dance of collating paperwork “evidence” and going back and forth between several parties, for nearly 12 months.
We’ve never had a great plan for our daughter. I mean, it has been ok. Something is better than nothing, right? We hovered around the $10,000 mark for CB and Core combined, and for those families within the scheme, we all know that gets you about six months combined worth of services/consumables if you’re lucky. You don’t need to be a mathematician to work out that at $193 a pop for one hour of allied health services, you have to let something go.
I had already supplied the required evidence in the way of reports from our regular therapists. Speech, social groups and other physical therapies. We even had a formal letter from our paediatrician of 10 years stating her disability.
Despite all this evidence, I felt I was on trial, like I must be making her disability up. I was to be judged on how well (or not well) I coped as her parent-carer.
We start the review via a phone call. It’s myself, the LAC, and for the first time in a long time, I had a support person – our Support Coordinator.
The LAC opened with “So what do you want?”
“Oh, we are really starting like this, are we,” I thought to myself.
I was stunned. “What do you mean ‘what do I want?’ We have sent you a *report that lists what we need and what we would like to request to support my daughter”.
*A Functional Capacity Report was completed by an experienced OT and cost us about $4000. This is the first time we have completed one.
Silence.
I’m not an OT, or any allied health professional for that matter, I certainly didn’t study years in university to become a doctor. However, I’m pretty sure the evidence we supplied has more university years than myself and the LAC combined.
Let’s just say that the conversation between the LAC and myself from then on, took a scenic route. My support coordinator stepped in, and I zoned out.
Luckily we weren’t on Zoom. My facial expressions were saying everything in my head, and it wasn’t pretty.
Towards the end of the call, the LAC then asked me very specific and personal questions about my mental health.
“Well, if my mental health wasn’t bad before the meeting, it sure was now,” I felt like saying!
I didn’t say that.
What I did say was “I am not answering these questions about my mental health. There is a clear indication of all this within the OT’s report, which includes the carer burden scale I’ve had to complete”.
For those of you who have not come across the carer burden scale, it’s an awful undertaking for any parent. I was asked to complete one by my daughter’s OT and it is used to monitor the change in a caregiver’s stress over time. I had tears streaming down my face whilst trying to complete it, but I knew that it was necessary to give a clearer indication of my life as a carer.
Of course, you can also write a Carer’s Impact Statement (just as soul-destroying), but I’ve done several of those before, and never received a better plan as a result.
As soon as our woeful call ended, the LAC proceeded to tell me that we wouldn’t hear from her, as she was going on holiday!
“Well, whoop-de-bloody-doo, good for you.”
I didn’t say that.
If it wasn’t for my support coordinator being in on the call, I would have thought this was a cruel joke. The hours of work that had gone on behind the scenes, leading up this point by professional people to support my daughter, simply dismissed by the LAC.
We ended up having our plan fast-tracked and we received a result in one week. (I have no doubt this was due to the result of the email sent by my Support Coordinator to the head office). We received the best plan we have ever received for my daughter. In fact, it is so high that it makes me wonder if all her previous plans were grossly underfunded.
Coincidentally, her twin received his reviewed plan a few weeks later, worth $30,000 less, despite needing very similar supports due to his disabilities. Family plans are certainly needed to overcome this growing problem that the NDIS will continue to face when plans are underfunded.
As reflected in our recent Source Survey – I am not the only one who feels misunderstood by our LAC.
When asked if they felt like their LAC had a realistic understanding of their child’s needs, our Source community gave them a score of 65 (1 is no understanding, 100 is understands completely). That leaves a fair bit of room for improvement.
I tell my story to inform and share.
The burden is not our children. It is the system in which we are worn down to support our children. Many of us give up or reduce our own work hours to care for our kids, at different stages in life because of circumstances.
Some tips for your planning meetings with an LAC –
- If you feel certain responses from your LAC trigger your emotional state, you have the power to say no to answering any question. You can pass.
- If you are unhappy with your meeting, put all your thoughts in writing and send to your support coordinator or the LAC at your local head office.
- DO NOT answer questions from an unqualified person about your mental health state. It’s a likely trigger and one that should be handled with care by a qualified professional.
- Do take a support person with you, whether your meeting is on the phone or in person. This is a big meeting and one that you should not tackle alone if you feel overwhelmed.
