If you are not the parent of a child with special needs you might think I have made this post up for entertainment value. Unfortunately the following is all true.
It was with great reluctance that last week I finally got round to another visit from a member of Social Services. This time it’s not a Social Worker but a Personalisation Officer and I was hopeful that this might put a stop to the 6 monthly change in Social Worker who then “needed to come out and see me”. I would inevitably have to describe at length Jacobs problems and talk about how hard it can be to care for him at times. I don’t ever want to discuss “not coping” because he is our son and we will always “cope”, but to get any help there has to be a certain level of need. Being with out a diagnosis means every little detail needs spelling out. This is exhausting! And I often feel tearful when they’ve left. I still don’t understand why it is so hard to read his notes and come to meetings prepared.
So last week was supposed to be the end of all this as a Personalisation Officer would take over from the Social Worker (as we don’t need one) and help co -ordinate Jacob’s package of care. The idea being that when, or if we receive input from another service there will be a document telling them all about our son from all the details of his disability to his likes and dislikes. Within the first 10 minutes it’s obvious she has no idea as to what disabilities Jacob has. She is thinks he can speak!…On further questioning I discover that the only information the Disabled Children’s Team have given her is on his package of care. On even further questioning on my part I discover this information is wrong! I’m speechless and she is obviously embarrassed. I feel sorry for her! So the irony is, to avoid me having to discuss every little aspect of Jacob’s disability over and over again to everyone new who comes into contact with him, I am doing just that…again!
I’ve never lost my temper at these meetings and I’m not sure how and why. I often have a little cry afterwards and maybe a bit of a sulk and I have been known to be a bit emotional during them but I hold it together. All I keep thinking is “this is just what I have to do to get what we all need “. However I know many parents would be put off and want to give up.. When I’m feeling cynical I think this may be why all this is done … to put us off. But the truth is much more boring and depressing…. It’s poor management and an over complicated system. Everyone who’s been to see us is kind and motivated to do good although individual effectiveness has been patchy. However the way in which they have to work is ” jaw droppingly long winded and out of date”. What really angered my last week was the complete waste of recourses. Two professionals traveling for about an hour to then sit in my lounge and ask me the same questions someone else has done at least twelve times over the last 6 or 7 years …..for about 2 hours. This is without the other visits we’ve had from other services CAHMS and DCATCH (the list of acronyms goes on and on!) all needing me to talk about the same thing! I know there are cuts to services happening all over the country so why have hours and hours of time been spent with me going over and over the same information?
When we receive services from social care they have been amazing. Jacob’s Respite Carer is outstanding (separate blog to follow) and the team of carers at the Saturday and Holiday are clubs are really motivated, caring and professional, but getting to this point is exhausting.
You will hear SN parents talking about 2 other departments; Health (anything medical like paediatricians and physiotherapists) and Education (anything to do with school like EHCP / statements etc)
As I understand it Social Services is there to support us as a family with a vulnerable child. To help us function as close to a normal family unit as possible. To recognise the significant obstacles we face raising Jacob to reach his potential, whatever that may be and to help us help him be a part of his community as much as is possible. The biggest irony of all is that compared to dealing with education and health they have caused me more stress than the other two put together!