It’s been a while since I posted. Mostly because I’ve been so incredibly busy, and life has (as usual) been up and down. There’s a lot that’s happened so this will no doubt be an absolute epic, but I wanted to make sure I put it into the public sphere, in case I end up getting dragged to court and having a gag order put on me.

My last post explained about our visit from the Police department and Child Protective Services – please read that first if you haven’t already. I said in that post that we were expecting CPS to come back and interview two more of my children, and to contact others about our family. Well, they didn’t. I didn’t hear anything from them until at least a month later, at which point I received a phone call from Gloria (not her real name), who advised me that our file had been handed over to her, and she was ringing to see how CPS could assist our family. I explained that I felt like every department had let us down as we didn’t fit into their neat little boxes, and that what I thought was needed was a team approach where everyone could sit down and brainstorm as to how, collectively, they could help our family.

Gloria thought this was a great idea and organised a “Care team” meeting. We met on 7th June – Gloria, myself, my advocate, our Occupational Therapist, my Counsellor, our key worker from Child First (no longer involved with us but she kindly came along), but unfortunately no representative from Child and Adolescent Mental Health. It was CAHMS that we particularly needed there, but I guess that since they closed our file they weren’t concerned about being there. The meeting was relatively uneventful and felt like it was just another box that had to be ticked by yet another government department. I was informed that some things would be followed up on, but I really wasn’t holding my breath. About the only interesting thing was that I was informed that we had been brought to the attention of CPS two times. I guess people are really worried about us – ha, ha. For the record, I’ve attached an edited version of the minutes of that meeting – I’ve removed identifying information and some non-relevant stuff.

We had also had our NDIS planning meeting in the meantime. Two lovely ladies who seemed very sympathetic came to our house, where I gave them a huge stack of paperwork, and showed them a video of BuddyBoy’s behaviour and daily activities. The paperwork consisted of copies of letters from our paediatrician, including one that specificially requested support for our family and explaining the severe situation we were in. We also included a report from a speech therapist recommending regular therapy; a huge report from our occupational therapist recommending all sorts of strategies and a separate sensory room; a comprehensive report from our RDI therapist and psychologist recommending an intensive program with lots of support and a separate area for BuddyBoy; and a letter from BuddyBoy’s last school teacher explaining his severe behaviours and requesting assistance. We also had a Carer Statement from myself and my hubby, explaining just how much we had been affected personally, how our marriage had been affected, and how our other children were not living anything resembling a normal life.

The NDIA representatives (one of whom was the actual planner who was going to be writing our plan), were impressed with the amount of information we gave them and asked quite a few questions. They then went away and we waited for our plan. I had three advocates at the meeting with us, and we all felt it had gone well, that we had been able to represent a fairly accurate picture of our life and the sort of supports that BuddyBoy needed.

While we were waiting for our plan, we decided to make use of the funds in our Individual Support Package as best as we could. Due to the switch over to the NDIS, we were unable to commit to the travelling teacher service from the Mansfield Autism School, nor were we able to start any new therapies. Unfortunately you don’t know what supports you’re going to get from the NDIS, and if you use a support under your ISP that’s not covered by the NDIS, you can then end up having to foot the entire bill yourself. Not something totally feasible given that the Mansfield travelling teacher service was going to cost $14,000 alone!

We decided to use some of our ISP funding by having additional hours of support workers for BuddyBoy – this made a huge difference in his behaviour, and made our lives not only bearable, but quite pleasant. We were able to get work done, spend time with the other children, and almost have a life! Unfortunately, we couldn’t continue with this forever – once the NDIS plan kicked in (and we didn’t know when as we would normally only be told after it had happened), we might not have those hours available. So we reduced our hours again, and saw a HUGE regression in BuddyBoy. I contacted the NDIA planner and explained what we had seen, and requested that they take this into account when working on our plan. You can read the edited version of what I wrote to her, here.

We didn’t receive our NDIS plan until the 29th June, and while it is a generous plan, it is not enough to fund the level of support worker hours that BuddyBoy needs. The plan in its entirety is slightly less than our previous Individual Support Package, all of which was meant to be for support workers and continence aids, although we had permission to use part of it to pay for therapy. We are also losing our continence aid funding from the government (a separate allocation) so overall we have less funding now than we did prior to NDIS.

The most upsetting thing is that we’ve seen what BuddyBoy is capable of, if only he has enough support available for him. That’s not going to happen on our current plan – we have to scale back the hours, and if we would ever like to go out and spend some time together just as husband and wife, or just with our other kids, we need to scale the regular hours back even further. We are currently looking at having workers here for him for five hours a day Monday to Friday, and for four hours on a Saturday. That will be too much on an ongoing basis however, and we will need to reduce the hours further after August.

So here we were, with an NDIS plan in hand which would normally be great, but not when you take BuddyBoy’s individual needs into account. We were also waiting (to no avail) for any action from CPS. On 12th July we finally received an email from Gloria – not advising us of any support that she had since managed to find out about, not letting us know about what her boss had said to the questions she was going to ask him, and not even asking how we were going. It simply said, “Hi Martina, I am just wondering if you can please email me through a copy of the funding that you are receiving for BuddyBoy through the NDIS? Thank you, Gloria.”

By this stage, BuddyBoy had been rather difficult to live with, to the point that he was dictating who was allowed to eat, what foods they were allowed to eat, and when. If we wanted to eat, we had a choice of going out, or locking BuddyBoy in his room – neither particularly exciting options. He had decided that anything that happened in the household was to be at his discretion, and if we went against this then the consequences could be quite violent. In the meantime, SuperBoy at age 7 was having severe anxiety and losing weight and we had to take him to the paediatrician and start him on medication.

We’ve got therapists telling us that BuddyBoy needs to have intensive, daily, therapy which involves a lot of noise and putting up with his behavioural outbursts, and cannot be done in our house. Yet there is nowhere else to take him, and no way of getting him dressed and in the car even if we had a place. Our sleep is still disturbed and there are still times where BuddyBoy doesn’t sleep at all during the night, or doesn’t go to sleep until he’s sung himself to slumber after 4am. Every government department we’ve approach has told us that there’s nothing they can do for us, and the last option we had – CPS – doesn’t make any enquiries or do anything else for us, they just ask to see his funding plan from the NDIS. Why his funding plan would affect their involvement I don’t know – maybe only those who don’t have any funds are deemed to be at risk???

I replied to Gloria to say that BuddyBoy’s NDIS plan was not enough for his needs and we were looking at reviewing it. I also mentioned that we were desperately in need of help and asked if she could let us know about any short term placement options. You can read my email here. I received a reply from Rosamunde (not her real name) who was Gloria’s boss, as Gloria was away for a week. You can read it here. None of my questions were addressed in Rosamunde’s email, nor was any further information provided as to what was meant to be followed up after our Care Team meeting. By this stage I was very sleep deprived, having a very difficult time coping with the constant noise and mess, and no doubt this shows in my reply to Rosamunde, which you can read here.

Hubby followed this up with a phone call a day or two later, and spoke with Rosamunde, who was unaware of what Gloria had said she was going to do, or if she had done anything at all. Rosamunde said she would be speaking to Gloria as well as her boss (who Gloria was supposed to have spoken with beforehand). The next thing we hear was today (a week later), from Gloria, leaving me a message to say that hubby and SuperBoy, as well my 11yo daughter, had not been interviewed as yet so that still needed to be done. Really? Three months after our initial interview, and now all of a sudden we need to have more interviews? My 7yo with major anxiety needs to be interviewed, when that same interview process made my tough as nails 15yo cry???? Thankfully we have an appointment with our paediatrician again tomorrow, and I will be asking her as to her opinion if SuperBoy is mentally able to cope with the questioning process.

I’m totally over this. Totally over every single government department using their cookie cutter approach to make square pegs fit into round holes, and if they can’t make them fit, they ignore them. I’m over the promise of “individualised support” when that’s not true at all. We have issues with our other children which I’m not going into here due to respecting their privacy, but suffice it to say that the NDIS plan for our oldest child (who is struggling greatly) has been stuffed up and is now being ‘reviewed’ so they can fix their mistakes.

I’m over not being able to sleep properly. I’m over not being able to open the fridge if I want food. I’m over not being able to use my cup if I want to have a cup of tea. I’m over the floors never getting cleaned properly because BuddyBoy objects to our cleaning lady. I’m over not being able to spend time with the other children because BuddyBoy requires more than I can possibly give. I’m over not being able to watch a movie with hubby unless we have a support worker here. I’m over spending every single cent on therapy toys and other items which get broken. I’m over “professionals” who seriously haven’t got a clue, telling us what we should be doing. I’m over being made to feel like I have to justify our lives to people who don’t want to help us, haven’t got a clue what we go through, and wouldn’t be able to do half as good a job as I do.