There are many people in this world who believe that when your child receives a diagnosis, they will suddenly become the beneficiary of all kinds of help and support. Sadly, this isn’t the case. So here are a few tips on how to negotiate the system we have to work with.
The first thing, the most important thing to remember is that as a parent, nobody knows your child better than you. And nobody knows what’s best for your child apart from you. And finally, you are the ONLY person who can advocate for your child without conflicts of interest muddying the waters. One of the advantages of being autistic myself in these scenarios is that I’m never swayed by the professionals because in my head, I know I’m right about everything(!) And my obsessive streak comes in handy too because I am like a dog with a bone and will never give up until my child has what she needs.
So, know what your child needs and do not be swayed from that thought.
You have to learn very quickly how the system works. There is a way to negotiate this system, which starts with realising that when accessing educational provision, local authority staff can become quite hostile the minute you suggest that your child needs costly support or anything they do not see as ‘standard’. I won’t go too much into my own struggles except to say that I’ve won two tribunals against our LA and they agreed to name the school I asked for the third time. I was asking for an out of county provision.
Local Authority staff will tell lies that you just have to ignore. For example, we don’t provide X, your child is too young for an EHC plan, we don’t want to label a child, etc. LAs are required to view a child as an individual and they are not legally allowed to have blanket policies. And sometimes you need to remind them of this. In writing.
Many moons ago, when I was trying to get ABA into my now 16 year olds (then) statement, I talked to another family whose twins were both doing ABA. I remember clearly their words to me
’The LA should be regarded as a cross between Satan and Hitler. Have as little to do with them as possible, except to get your child’s legally binding Statement into place’. *a statement was the old name for an EHC plan.
Certainly, this is a cynical approach. But did it help me? Absolutely, it did. I became uninterested in what the LA were up to because it was clear they would do anything to avoid helping my daughter in order to save money. In the run up to our first tribunal, the one to get ABA, I used the data protection act to get the LA to cough up my daughter’s file to see how they had made decisions about the non existent provision they had (not) put into her statement. I discovered a hand written note from the LA’s own Educational Psychologist which said that ABA was ‘too expensive’, that it would ‘set a precedent’ together with personal comments she felt fit to write about me(!) I may be quirky but this was supposed to be about my daughter!!
The fighting never ends but I would like to offer the following tips when trying to access provision your child needs. This is specifically regarding education. I will do advice on Disability Living Allowance at another time.
– Find out who your child’s case worker is and keep your correspondence with them via email
– keep correspondence to email only. If something was said over the phone or in person it did not happen. Or at least, you cannot prove it was said.
– keep your contact with them to a minimum. They will drain you and you need your energy for the fight to get what you are rightly asking for
– do not be swayed by emotional blackmail shit like ‘oh, by taking the council to tribunal you are depriving other kids of what they need’ often said by people who work for the council.
– In the run up to an appeal / tribunal make sure not to give your case away. Don’t bother to attend meetings with the LA unless you have reason to believe that they intend to change their position. Which occasionally they do but often they don’t.
– use the DPA to dig up information that the LA would prefer to remain private.
– know the law!! Learn the law. This is your key to getting what your child requires. If the LA says or does something illegal then write to them telling them how they are wrong and cite the legal aspect. They rely on people not knowing this!
– If LA staff / representative says something that sounds shady/ incorrect/ bullshit then write them an email asking them to clarify or confirm if this is actually their position. Anything they say in writing, they cannot easily take back.
– When you write an email, copy in as many people as you can. The more people who are copied in, the harder it is for them to tell lies or say things that will make them look stupid, unprofessional or not transparent.
– remember that you are your child’s best and only advocate.
At a time when LAs are making cuts, the council will make it hard for you. But this is not your child’s problem! And your child is entitled to a level playing field.
I became very disliked by certain LA staff. One in particular would sit at Annual Review meetings and make repeated digs at me. I was seen as tricksy and awkward. Did I care? No. Do I see her now? No. Does she even remember my daughter now? I doubt it. She’s not the one who still lies awake at night worrying about her! There are times and places for popularity contests and this wasn’t one of them so don’t be intimidated.