Hello, my name?s Starlight I am a parent to two children, Sonny aged 4 and Maria aged 3. Sonny was diagnosed with ASD at the age of 3yrs 9months. We had to pay privately for the diagnosis, because although the NHS ASD pediatrician had seem him and confirmed to me verbally there was no doubt, she was not allowed to make an official diagnosis without a multi-disciplinary assessment for which there was a year long wait.
Initially we were comfortable with this wait. We were assured that provision was based on need rather than diagnosis and that we would be referred to various agencies. But then the letters started to come through ?Dear Starlight, Your son has been placed on file PENDING diagnosis?. So that led to our first encounter with the independent sector.
£700 for a signature. We went through the motions at that appointment with the highly respected private pediatrician. To feel we were getting our money?s worth we kept her there for the two hours asking questions we already knew the answers to. There wasn?t really anything to say. There was no doubt. We just needed a signature.
We?d done it! We?d got the golden ticket to access services that could help
us.
Well now. I have to explain. Until that point I had been a believer in the public sector. In fact, I worked in it in one capacity or another my entire working life which is why, when I asked the Special Needs Health Visitor what programmes of intervention they had in store for Sonny, and her response was ?well, no one programme, this Local Authority picks the best bits of everything and matches it to your child?s individual needs? I knew very well what that vague statement meant.
I am not a natural fighter but somehow, over the last couple of years I have had an incredible amount of practice. I suppose when you go into high adrenaline meetings week after week after week just trying to get a straight answer about provision, you start to lose your sensitivity and become a bit more direct and focused.
I remember by first multi-agency ?Team around the Child? meeting. I was there, humble, hopeful, scared, on the verge of tears, desperate. It sounded absolutely wonderful. This person was going to 'advise', that person was going ?write a report?, someone will 'refer', another person was going to 'monitor' and another going to send my son?s case to a 'panel', and someone else was going to ?flag up? his needs to a 'board'. Yet another person was going to put together a 'programme' and someone else was going to 'assess'. We were going to get 'support' and my son was to get 'therapy'. Someone else was going to 'investigate' the 'opportunities' that our LEA had for children such as my son, and someone else was going to 'liaise' with us.
A couple of months went by and in that time it was business as usual. No-one had come to see Sonny, and I had not spoken to any professionals about him. I made some phone calls I realised that some if not ALL of the above was happening in terms of moving funds and delegating money to people's case-loads, but yet not one single OUTCOME had occurred for my son. The reason we had not seen anyone was because they were all far too busy referring, and investigating and writing programmes or whatever. I started to phone people and do a bit of complaining and apologising and in my desperation to understand the process, somewhat agreeing with the idea that he's only little and we have lots of time.
Then I came across a fairly blunt Speech and Language Therapist from another Local Authority who simply said 'Stop whining and do it yourself then, and get a bloody move on!' The best advice I ever had!
Starlight - A parent.