I am involved with a project in Manchester which is seeking the views of Parent/Carers of young disabled people in relation to the issues they as Parent/Carers face during the transition period (Children's to Adult services).

We are looking at involving Parents from the start by forming a sub group to formulate a questionnaire to be posted out across Manchester and follow this up with some focus groups.

I would be interested to hear about any similar work across the country, especially with regards to the questions we should be asking Parents.(maybe someone has good examples of questionnaires used in the past).

Regards Kev

Hi
Id be interested in any feedback you have received so far

Hi
I'm a parent of a young man aged 18 and I live in Oxfordshire. I help run Oxfordshire Family Support Network an orangisation that provides information, support, advice and training opportunities for family carers of people with learning disabilities (Children and Adults)

We have just obtained funding to set up a Transition Support Service for families, providing a "one stop shop" for independent information and advice on all issues related to transition. There will also be a rolling programme of workshops and we are in the process of deciding how this will look, but the aim is to offer "bite size" chunks of information at the relevent times rather than bombarding parents with too much information in one go.
We are also in the middle of writing a guide for families and young people (by carers for carers)and planning a Transition Fair, where all local services, schools, colleges and providers can showcase what they do and let families know whats out there.
Prior to getting this funding we had already we had already done a substantial amount of work with families, workshops and focus groups... and this service is being developed based on what They have told us they need.
I also sit on the local strategy group, so am working closely with the LA,LSC,PCT, schools and colleges to link in with the work they are doing to improve Transition. There is still lots of work to be done to ensure this project is successful but, given that there is very limited support for families presently we are convinced we can make a difference. I also believe that the strength of this approach is that we are not only involved as families ... we are taking the lead.

Hi loki
Once the guide is finished and once we get going with the wokshops I'll happy to share our experiences with others. We are still in the very early stages and have yet to roll this out(having only just got the funding) We obtained our funding from the local Learning Disability Partnership Board as they fund local projects from their Learning Disability Development fund and our project is specifically for families of young people with learning disabilities. However, the guide will be useful for all family carers of of children with any disability. It might be worth finding out who the transtion champion is on your local Partnership board as they should all have one.
As for involving families it might be worth linking with a local parents forum, if there is one in your area. you can check this out by going to the Together for Disabled Children website ... http://www.togetherfdc.org. The participation programme advisor in your area is Carolyn Deveney and she can be contacted at carolyn.deveney@cafamily.org.uk and she will be able to advise you of any groups or plans for a parents forum in your area.
hope this helps