Why it is so hard for me to find vital information about services for my children
I am mum to Emily, aged eight, who has autism and severe learning disabilities. She is a wonderful little character, full of beans and just learning to sign. She brings me so many joys but caring for her is exhausting, mainly because she runs on Duracell batteries and does not need much sleep.
When I needed daytime respite care I was astounded to discover two things: first, how few services were easily available in my locality and second, how hard it was to actually get information about the variety of services that we needed. A lot of what I did discover was quite by chance.
I decided that it was no good moaning about this and, in July 2010, I opened my own centre for daytime respite care for children who have disabilities. What was a real revelation to me was how hard it is to get information out to parents as a provider of services, essentially the same problem I had experienced from the other side as a parent. Special schools were helpful and continue to be supportive by sending out information. However, I want to reach children who are educated outside of the specialist schools. I know that there are 899 children in my immediate area who have disabilities. Where are they? Who supports them? Most importantly, which professionals hold the power of this information?
To answer these questions, I turned to my local authority. I had a meeting with a senior officer responsible for the Family Information Service and put my concerns to her. In particular, I flagged up the council’s archaic practice of not working with organisations they do not have contracts with – this is particularly ironic at a time when councils are cutting services left, right and centre. The council will only refer children to projects they have commissioned. This seems to me to be a very high-handed attitude which disempowers parents who want to know about different projects in the area and make up their own minds. Parents are not stupid and they need to be informed to have real choice.
The lady from the council took on board what I said and is currently asking parents what they would like information about. I am assured that responses will be incorporated into the new-look web site they are currently working on. Perhaps this is a small move forward in the right direction.
I have come to realise that professionals need to work together much more closely if we are to better understand each other’s work and specialism, and be more aware of the constraints we all work within. This could only serve to improve the flow of useful information to families.
I have written to my local county councillor and MP asking them to host a professionals’ day where all services who support disabled young people can meet and exchange information which can then be passed on freely. I’m awaiting a response.
In my opinion, it is the mainstream schools that really need to get specialised information out to parents. We parents have been told for years that educating children with SEN in mainstream schools is the way forward, and I’m sure for a lot of parents it works very well. Children in these schools, and their parents, need information about services just as much as those in special schools, and in my experience they do not get it.
Parents and carers must have information to make informed decisions about services. To help facilitate this, I call on all professionals to start talking to each other and the families they serve.
Further information
Jean Wilson runs New Hope, a respite centre in Worcester:
www.newhopeworcester.co.uk
