My son is 7 years old and has been a participant of the NDIS in South Australia since he was 2 years old. His first planning meeting was in June 2013. He has a rare chromosome Disorder. He has multiple and complex disabilities along with multiple and complex health issues.
For the last few years we have had plan reviews yearly and they have been conducted by NDIS planners. As far as I know his plan is flagged as intensive. His last NDIS plan review was conducted by a LAC from NSW. We had a one-hour meeting with the LAC and no contact from the LAC or planner in relation to his current plan prior to it being activated.
His current plan was significantly reduction from his previous plans with only one reason being given. The reason was funds had not been used in the previous plan. This is not true. All his Daily Activity funding had been used. His CB Activities has not been fully used due to him continually being very unwell.
My son has a team of specialist doctors and therapists that have supported him throughout his life and know him well. He also has a team of support workers that assist him with his daily life and allow for me to care for him in the home setting. He attends a special unit in a mainstream primary school when he is well 4 days per week.
The way the NDIS is being implemented, in my opinion and from my experience, is convoluted & opaque. It also results in my time not being valued and my expertise in my son not being taken into consideration. I have no idea if my son is enrolled in the NDIS under Early Intervention or Disability. I had no idea what his primary disability was listed as until I received some documents I had requested under FOI Act 1982. What does “Chromosome Disorder” mean? What level of funding does it trigger?
I am now sitting here finalizing this submission on the day it is due* and it being terribly incomplete as my son is unwell. I am going through the usual … When do I take him in to hospital, now, in an hour, in the afternoon? … Is he improving or getting worse? … Will I leave it too late or will I take him in too early? … Is he in pain? … Can I leave the room to have a shower? … Will I have to call an ambulance or can I take him in myself (I won’t know until I sit him up)? …
This submission is important and I’m angry and ashamed that I have not been able to give it the due time it requires. I have to be brief as I’m writing this with one hand whilst gently rocking my son with the other … I’m sitting on the floor monitoring his breathing … trying to prevent him from biting his hand … waiting for a seizure … trying to decide if it’s time for the hospital …
We are one of the lucky ones, his internal review has been allocated after 2 and a half months. The NDIS planner doing the internal review has informed us that his current plan is underfunded and he will be issued with a new plan once the review is complete. So now I am in the process of getting more reports, explaining my son’s condition and our life again whilst trying to look after him. I have just read that current plans are being rolled over for an additional year for some … why not us? Why must we go through this every year. Why must I have to explain to multiple people that my son lacks internal motivation however has the ability to hit a “Yes” switch in appropriate situation? Why must I explain again and again that I am unable to care for him on my own? Why am I made to constantly feel I am inadequate as his mother and that his inability to do things highlighted again and again. If he is not funded, hence supported, adequately it’s my failings for not clearly explaining his needs.
The distinction between disability and health that has been constructed is dangerous and a complete fallacy. How can I present my son to the NDIS yearly as half a person? We need a case manager who can traverse this construct and offer people like my son direction, security, avenues of care, etc. I am not a support worker, I am not a nurse or medical specialist, I am not a therapist, I am not an advocate … I am a mother who wants to care for her son but I am also one person, one person with limited mental, emotional and physical strength. The level of responsibility placed on me in this system is dangerous and completely unreasonable. My son is not well so I will finish with the following: the NDIS will not solve everything and has been, in many ways, wonderful for my son but when it also adds stress to an already stressful situation something needs to change.
I apologise for this very disjointed submission and that I have not been able to clearly articulate my arguments for my son’s and others’ sakes but it is what it is. I have put in as much as I am able to and am very sad that this is all I can give at this time.
*I was sure I’d read that there was a due date for this submission however now I’m submitting it I read that there is no due date however I will continue with the submission as I think it pretty much sums up our experience and also highlights areas that are in need of attention.