Working with Parents

We have been working with a group of parents who have children aged between 4 and 19 with varying disabilities and complex needs, all of whom either had an EHCP or were in the process of an EHCP, and all of whom confirmed that their child’s views were not sought during their EHCP process.

Only one parent confirmed that her child had been invited to their Annual Review (and stayed for two minutes); for the majority, their child had never been invited.

We wanted to explore how a Multimedia Advocacy approach and the Rix Wiki tool could improve their experience and participation in the EHCP process.  The results were very interesting.

Annual Reviews

Most parents felt that their child/YP could now attend, and contribute to, their Annual Review by using their Wiki.  One confirmed that her son was able to attend and participate in his Annual EHCP Review for the first time.

Collaboration and Communication with Professionals

Parents very much welcome the opportunity for professionals working with their child/YP to provide video input into their Wiki; all felt by having a Wiki their child’s/YP’s EHCP could be better co-ordinated in a joined up way.  For example, one child’s paediatrician provided medical information on their Wiki to aid with secondary school transition.

All parents strongly agreed that their child’s/YP’s communication will be better understood by everyone involved with their child’s/YP’s education and care by accessing their Wiki.

     “The short video of xxx singing the ABC song clearly showed how he tries to pronounce sounds, and this is instant information without having to spend time trying to speak to other professionals.  In time these clips will build to demonstrate improvement progress (or not).”

Comment from parent.

All parents felt that information could be shared in an effective way between professionals by using their child/YP’s Wiki.

     “Makes me and the family more reassured and less stressed to know that we have a way to communicate easily and effectively with others involved in his life”.

Comment from parent.

Transition

All parents felt that having a Wiki could facilitate a smoother transition between educational and residential settings.

     “Leaving home, this would be a fantastic tool to ensure support staff and work experience staff know everything”.
Comment from parent.

     “I can see how this will augment communication and sharing of information between my son and everyone working to support him. As he progresses into adulthood and away from home, we will be able to withdraw, confident that those responsible for him in the future will have access to his history and a clear picture of his current needs; will benefit from input from those who have known him best and xxx himself.”
Comment from parent.

     “I can see the enormous potential of the WIKI for xxx – who is nearly 20 years old.”
Comment from parent.