Independent Assessments

                                  Submission 179

To whom it may concern

I am writing to you are a mother of a child who has a extremely rare congenital eye condition cone rod synaptic disorder that causes her to be is legally blind, it also causes severe light sensitivity. She may be on the spectrum (awaiting diagnoses).

Since my child was first diagnosed and we were told she needed early intervention services. We have found everything with the ndis has been a fight and a battle. Ndis was meant to make it easier on parents but in my daughters case it’s just been stressful. Early on we were told by a staff member at “ ” that my daughter would not be entailed to ndis as she talked/communicated to well, and to come back when daughter is struggling at school. As that would prove she needed the help”.

I have also had to deal with services like who staff is so incompetent at providing any actual support. Only thing staff did well was charge my daughters ndis plan for every little thing they could.

So Imagine now after year fighting to obtain ndis for my daughter I am hearing about government implementing Independent assessments. They longer intend on using the reports from the specialists. The eye doctors, early intervention teachers, occupational therapists and her occupational and mobility specialist. They have spent time with my daughter they have read up on her condition. They know what her needs are now and for the future. How can someone spend a short time with my child know more than her specialists

People with disabilities do not fit into a box. Their needs are complex and ongoing. How will the independent assessments ensure my daughter and other people with disabilities do not get left behind in the education system, left out from integrating into the community, miss out life because they can’t get the necessary supports. You can’t! Someone can’t spend 15 min or even hour with my daughter and know what her visional needs are. They can change day by day, hour by hour due to many reasons like eye fatigue, poor lighting, and sickness. Something that her team of specialists do understand.

I have already dealt with someone after a phone call said my daughter was not disabled enuffe. So I am realy am worried that my child will get behind before she has even started her life. Is that what the plan is to take funding away from people so they miss out on being part of the community?