Before my disabled son came into my life I was blissfully unaware of all the difficulties some parents have in getting their children’s needs met.
I assumed that the right wheelchairs were provided when needed.
I assumed that the right school places were available.
I assumed therapy needs were met.
Then along came Adam!
You might have heard it said that the hardest thing about having a disabled child isn’t caring for them, but fighting the battles to ensure that their needs are met by the appropriate services. It is true!
Many years ago, when Adam was at nursery, we started the process of getting him a Statement of Special Educational Needs, the legal document to ensure his needs were met. It took 19 months from start to finish and he ended up starting school without having a Statement in place.
The process left us baffled, emotionally battered and exhausted. Our child had huge and pretty obvious disabilities, yet we had been faced with an enormous battle to get support in the classroom. When it was this hard to get a Statement for a child who could not sit unaided, speak properly, feed himself or take himself to the toilet, it left us wondering how on earth parents of children with less physically obvious disabilities managed to get through the process at all.
Fast forward 7 – 8 years to the new process, the Education and Health Care Plan, supposedly streamlined and “person centred”, with a target of delivering a finalised EHCP within 20 weeks.
We started the process in March 2016. We are now in September 2017 and it has not yet been finalised.
Eighteen months so far.
To be “fair” they did try to issue an EHCP, but not getting his name right was just the start of the issues with that one!
We are now almost there! It is almost agreed. Yet one important therapy provision isn’t included in it because “it is standard practise that SLT (speech and language therapy) ceases once a child leaves primary school.” So, completely not based on need! Do I argue and delay it further? Or do I accept that I just can’t battle everything? Maybe the time and energy spent battling could be better spent finding a private speech and language therapist? I just don’t have the energy right now to take on another battle and Adam needs his EHCP to be finalised so that the right support can be put in place.
When you have a disabled child there often seems to be an emotional “cost” to getting support. Sometimes it is intrusion into your personal life or the stress of attending meetings or proving why your child needs more than three nappies a day or that a particular brand harms your child’s skin.
On this occasion, to get the rest of the support needed, that “cost” is going to be losing speech therapy and wondering if I have done the right thing.
I have done my best. I have attended too many meetings, I have written too many letters, I have cried too many times, I have lost too much sleep and I have used time and energy that I could have been spending with my son.
And that is the biggest “cost” to any parent.