Anyone who has ever been involved in a NDIS (National Disability Insurance Scheme) plan review process knows that this is the most stressful and emotionally exhausting stage in the NDIS funding program. This is the week for us. I’ve spent nearly 6 weeks preparing reports, letters, invoices, quotes, referrals, general advice, feedback, medical and cognitive questionnaires and face to face appointments all in the lead up to the meeting tomorrow.
The meetings in the past have gone from 4 hours to 8 hours over two days. Tomorrow is supposed to be my “me time” day but I have this on for most of the day and the baby is sick. I cant reschedule as we are nearly completely run out of all our current years funds. To be honest, I’ve only had three fridays which were designed to be “me days” with both kids at preschool/daycare, but I am always doing paperwork or appointments for our son. I look forward to an actual self care day soon. Just even an hour or so would be essential to my mental health right now. But I have to get this NDIS plan set up and funded appropriately to best support him for the next 12 months.
Its a very emotional day. There is always tears and goals discussed which seem so simple, yet those goals have been the same for 3 years. Eg learn how to get dressed and undressed. You go through every single aspect of your child or the applicant’s disability in the most detailed level of scrutiny and its a negative focus. The focus is on what cant be done and what needs support and how/why/where etc.
Tomorrow is our meeting day. Once this is over then we wait for the plan to be reviewed by the NDIA (Agency) and then you get the plan outcome. It can be appealed, but this is another difficult process.
After tomorrow is done, I can try to explain in more detail how much work must be invested into the planning process and why this is such a draining period. I am seeking the support of a person to sit next to me virtually (covid) and be there in case the anxiety is too much. The pressure to not miss anything or not stand up for your childs needs, the guilt to wish you didnt have to do this. But here I am. I wonder if this will ever be less heartbreaking. From birth to 5 years of age, all I ever do is hear and talk about how behind or delayed he is, because that is what the system does to you. Milestones, therapies, assessments, baby health checks, preschool, vaccinations, you name it… I dont think a special needs mum can ever not be saddened or angry to hear how behind your child is. This can happen multiple times a day, multiple days a week, forever. Can you imagine?
Fingers crossed I’ve done enough.
A Journey to Joy 