An alternative view from a Care Professional working with Children with Disabilities.
Casdok asked me if I would write a short piece about what it’s like on the other side of the fence.
A Social Worker’s point of view.
Firstly, can I just say that I came into Social Work with the aim to be able to support and care for people in need and I wanted to make a difference. Assist people to reach their full potential and support families with the best levels of care possible. I believed I could make a difference, how quickly my hopes were dashed, how quickly I was trod into the ground by petty bureaucracy and lack of funds and lack of resources. Every small piece of resource had to be begged for and eeked out to support many families, so instead of being able to offer respite every weekend, you’d be lucky to get one night a month.
I digress, Casdok has allowed me to use her situation of an example of Social Care support and I do feel well placed to talk about it because I was Casdok and C’s social worker for over 12 years. That may surprise some of you, because most of the time all you hear about is social workers coming and going, only staying in teams for 1-2 years before moving on. That is not how I work, I’ve been a “stayer”, even though my title changed, the department changed around me but I stayed with my families through thick and thin.
I joined this team in 1994, having worked for another team elsewhere in the county for the previous 10 years.
Casdok came with a Government Health Warning. The mere mention of her name had social workers and managers quaking in their boots and fleeing for the hills.
Casdok and her previous social worker had not seen eye to eye, and management had had to take over waiting for a new social worker to take on this daunting role.
Then I joined the team, innocent of past history but was soon briefed as to the notoriety of the case and the ominous task of taking over.
You see Casdok knew what she wanted for C and wasn’t prepared to rest until she got it, this always causes major problems for a strapped for cash Social Services team.
I must admit I was dreading my initial contact with Casdok and had many sleepless nights leading up to it. But when the day arrived, I met with Casdok and C for the first time and I was shocked by the enormity of his disability and what Casdok had to go through each day. I was totally in awe of Casdok’s determination to get the right school for her son. I vowed there and then that I would do my level best to help her achieve her goals for C.
Not everything was plain sailing, I had a huge fight on my hands to get Senior Management to agree the necessary and appropriate care packages.
There would be weeks and weeks of utter frustration and desperation during which time I would be writing reports, presenting to resource panels and attending meetings, only to be turned down and told to do something else, find a more economic resource, then rewrite reports and go back to panels. But I was resourceful and tried to be as creative as possible within a confined situation as I was determined to fight for Casdok because I believed she deserved the best I could get for her and for C.
It was an uphill struggle, no sooner would we get one part of the care sorted then another problem would arise and we’d have to start all over again.
Casdok got the school she wanted for C, but the holiday respite wasn’t working and it was so difficult to get it right. C’s autism meant he really found change intolerable and to come home from termly boarding and then have to go to respite just tipped him over the top and his behaviour would escalate to such levels that no one knew how to cope with him. So we had to think again.
I organised home based respite for him, and whilst this was partly ok, it wasn’t ideal as the nurses varied from visit to visit and C got very confused and distressed, causing even more problems for Casdok when they left.
Then came the Godsend, the Government introduced Direct payments. I was a huge advocate for this, I’d already been attempting to offer flexible respite to families, i.e. giving them funding to sort out their own care but it had only been on a limited basis. This new step forward meant that Casdok could choose who she wanted to support her and C at home.
So I lead the way and set up the first Direct payment for Children in our County and Casdok at last got the support for C that she needed, it only took 8 years!!
Casdok and I shared many difficult times over the years- but I believe Casdok trusted me to do my best and whilst I couldn’t always get what she needed straight away I usually got there in the end. I learnt to play the system. But it frustrated me enormously that families like Casdok and C have to jump through so many hoops to get what they should have by right, appropriate education, social life and access to good health care. Having a child with Autism is struggle enough without having to battle constantly for every small amount of support. Yet the only way a family seems to get enough respite or the appropriate schooling is to fight and fight hard.
I’ve known Casdok for 14 years and I still don’t know how she does it, where she get her energy to keep going, but she does it, because she loves her son. And I have the greatest respect for her, I hold her in high esteem for all she has done for C and for other people with autism.
Working with families like Casdok and C is exhausting, but there is a sense of achievement when you’ve fought the battles and at last got the right resources in place.
I do not usually stay in contact with clients, but Casdok has become so much more than a client and now I no longer work for that organisation we have become good friends.
Don’t be too hard on your social worker, she has a job to do within the tight restraints that councils operate, but if you look for the human being within you’ll find a caring, wonderful person who just wants to help you………..Well, that’s how I felt!
Thank you Inthemud for writing this, and for supporting C and I for all those years. We certainly went through a lot together. I really don't know where we would be now with out your determination and heart.
You did make a difference. x